A. Aboriginal/First Nations cancer care
747 Inuusinni Aqqusaaqtara: An Inuit Cancer Project
Savanah Ashton1, Tracy Torchetti2, Sipporah Enuaraq1
1Pauktuutit Inuit Women of Canada, Ottawa, Canada;2Canadian Cancer Society, Toronto, Canada
Background/rationale or Objectives/purpose: Cancer is a leading cause of death among Inuit populations. Compared to the general population of Canada, Inuit have a higher incidence of cancer. Pauktuutit Inuit Women of Canada is developing culturally appropriate cancer awareness tools to support community health representatives, health care providers and Inuit cancer patients.
Methodology or Methods: Pauktuutit and the Canadian Cancer Society are working together to develop meaningful ways to support better health across Inuit populations. Inuusinni Aqqusaaqtara - My Journey – is a suite of cancer resources developed for Inuit patients, caregivers, and health care providers with the aim of helping increase patient health literacy and understanding of the disease, their diagnosis and treatment. Along with existing multilingual cancer glossary, personal journal and information booklet, two new e-learning modules have also been created. One module engages patients and caregivers through videos, what to expect during the cancer journey and other helpful information.The other engages health care providers on cultural sensitivity, how to include the Inuit cancer resources into their practice and other key learnings.
Impact on practice or Results: The goal is to increase knowledge about cancer, to improve communication between Inuit cancer patients and non-Inuit health care providers, helps to dispel fear of cancer, enhance support services, promote mental wellness for newly diagnosed Inuit cancer patients, and improve overall quality of life of Inuit communities.
Discussion or Conclusions: Pauktuutit's cancer resources are working to build cancer literacy, increase screening rates, encourage lifestyle changes to reduce cancer incidence and develop platforms for support at every stage of the cancer journey for cancer patients, caregivers and health practitioners.
545 The structural challenges and concerns of racism causing distress for First Nations cancer patients- How do we achieve Truth and Reconciliation in oncology care?
Carole Mayer1,2,3, Usman Aslam4, Roger Beaudin5, Mark Collins1, Yvette Corbierre6, Anna Grigull7, Doris Howell8,9, Tammy Maguire10, Mary-Jo Wabano6, Pamela Williamson10
1Health Sciences North Research Institute, Sudbury, Canada;2Division of Psychosocial Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada;3School of Social Work, Laurentian University, Sudbury, Canada;4Aboriginal Cancer Care Unit, Cancer Care Ontario, Toronto, Canada;5M’Chigeeng Health Centre, M’Chigeeng, Canada;6Wikwemikong Health Centre, Wikwemikong, Canada;7Mnaamodzawin Health Centre, Little Current, Canada;8Princess Margaret Cancer Center, Toronto, Canada;9Faculty of Nursing, University of Toronto, Toronto, Canada;10Noojmowin Teg Health Centre, Little Current, Canada
Background/rationale or Objectives/purpose: Objectives/Purpose: Distress experienced by cancer patients is often associated with the disease and cancer treatments. Screening for distress is endorsed as the 6th vital sign in Canada as a means to proactively engage cancer patients in identifying their cancer distress for improved symptom management. This presentation will focus on the evaluation of the Mobile Interactive Symptom Assessment and Collection (mISAAC) pilot project where First Nations cancer patients were to complete a symptom report when a home visit was done by a health care provider.
Methodology or Methods: Methods: The research protocol was approved by the Anishinaabek research review committee (September 2017) and the hospital research ethics board (October 2017). A total of six focus groups were conducted from December 2017 to February 2018 with three of the four pilot sites implementing mISAAC; one focus group with patients (n = 5), three focus groups with health care professionals (n = 23) and two focus groups with Elders/Traditional Healer (n = 10).
Impact on practice or Results: Results: Feedback received from the focus groups went beyond the project of symptom screening and management. Concerns were raised about the structural challenges and issues of racism that amplify distress during the cancer journey in addition to the normal stressors experienced with a cancer diagnosis.
Discussion or Conclusions: Conclusion/Clinical implications: The Truth and Reconciliation Commission of Canada released a report in 2015 with a call to action with recommendations. Psychosocial oncology programs across Canada are poised to strategically plan and advocate to improve cancer care for First Nations cancer patients based on these recommendations.
492 Understanding the importance of belonging and connection to the wellbeing of Indigenous Australians: Yarning circles and interviews with Indigenous Australians
Kate Anderson1, Gail Garvey1, Lisa Whop1, Joan Cunningham2, Julie Ratcliffe3, Alan Cass4, Allison Tong5, Michelle Dickson5, Tamara Butler1, Kirsten Howard5
1Menzies School of Health Research, Brisbane, Australia;2Menzies School of Health Research, Melbourne, Australia;3Flinders University, Adelaide, Australia;4Menzies School of Health Research, Darwin, Australia;5University of Sydney, Sydney, Australia
Background/rationale or Objectives/purpose: There are growing concerns that existing measures of wellbeing commonly used in cancer care do not index aspects of life that are relevant to Indigenous people. Using wellbeing tools that are not culturally-relevant to the target population have questionable value to cancer research, policy, and practice. We aimed to describe the perspectives of Indigenous Australians on what comprises wellbeing to inform the development of a culturally-appropriate measure of wellbeing for this population.
Methodology or Methods: We conducted 37 yarning circles and 6 interviews with 359 Indigenous Australian adults to explore concepts of wellbeing. We used purposive sampling to ensure diversity in gender, age and geography. A thematic analysis was led by six Indigenous Australian researchers and guided by an Indigenous Advisory Group.
Impact on practice or Results: Despite great diversity among Indigenous Australians, our analysis revealed a common centrality of belonging and connection with family, community, and culture to individuals’ sense of wellbeing. While other components of wellbeing emerged, this presentation focuses on the importance of belonging and connection, due to its particular relevance to cancer care. A strong sense of belonging and connection reinforces social and emotional strength and support and fortifies Indigenous identity and pride.
Discussion or Conclusions: Including aspects of life such as belonging and connection in wellbeing measures, which are relevant to and value by Indigenous Australians, will enable better informed decision-making and patient-centred care provision for Indigenous people with cancer. There is scope for clinicians to harness the wellbeing benefits of a strong sense of belonging and connection to advance Indigenous cancer patients’ coping and healing.
211 Aboriginal and Torres Strait Islander People's Domains of Wellbeing: A Comprehensive Literature Review
Tamara Butler1, Kate Anderson1, Gail Garvey1, Joan Cunningham1, Julie Ratcliffe2, Allison Tong3, Lisa Whop1, Alan Cass1, Michelle Dickson1, Kirsten Howard3
1Menzies School of Health Research, Darwin, Australia;2Flinders University, Adelaide, Australia;3The University of Sydney, Sydney, Australia
Background/rationale or Objectives/purpose: There are significant disparities in cancer outcomes between the world's Indigenous and non-Indigenous peoples. Given these disparities, it is critical that quality of life (QOL) and wellbeing can be meaningfully measured; however, conventional QOL instruments often do not include all dimensions of wellbeing relevant to Indigenous people and their holistic understandings of wellbeing. The objective of the comprehensive literature review was to identify the domains of wellbeing relevant to Aboriginal and Torres Strait Islander people in Australia (hereafter, respectfully referred to collectively as Indigenous Australians).
Methodology or Methods: We searched PsycINFO, MEDLINE, Econlit, CINAHL, and Embase (from inception to June 2017, and updated in March 2019), and grey literature sources using keywords relating to adult Indigenous Australians’ QOL and wellbeing. From 278 full-text articles assessed for eligibility, 95 were included in a thematic analysis.
Impact on practice or Results: This synthesis revealed several interconnected wellbeing dimensions: autonomy, empowerment and recognition; family and community; culture, spirituality and identity; Country; basic needs; work, roles and responsibilities; education; physical health; and mental health.
Discussion or Conclusions: The findings reveal a range of wellbeing domains relevant to Indigenous Australians; these domains may be shared with Indigenous populations globally. The findings indicate that in order to ensure meaningful wellbeing measurement, there is a need for a tailored wellbeing instrument that includes factors relevant to Indigenous Australians. Such an instrument will contribute to the development of culturally-appropriate outcome measures across a range of illnesses, including cancer. Moreover, ensuring the instrument can be used in economic evaluations will enable effective translation of research into practice and policy.
209 Traditional and Complementary Medicine: Perspectives of Indigenous Australian Women Undergoing Cancer Investigation and their Cancer Care Providers
Alana Gall1, Kate Anderson1, Abbey Diaz1, Jon Adams2, Veronica Matthews3, Gail Garvey1
1Menzies School of Health Research, Brisbane, Australia;2The University of Technology, Sydney, Australia;3The University of Sydney, Sydney, Australia
Background/rationale or Objectives/purpose: Traditional and Complementary Medicine (T&CM) is increasingly used by cancer patients alongside conventional treatment. Given the potential risks and benefits of T&CM to cancer patients, doctor-patient communication is critically important. Little is known about T&CM use by Indigenous cancer patients. This study explored T&CM use and disclosure among Indigenous women undergoing gynaecological cancer investigation and cancer care providers for this patient group.
Methodology or Methods: Fourteen Indigenous women undergoing hospital-based gynaecological cancer investigations completed the R-I-CAM-Q survey to determine T&CM use. Semi-structured interviews were conducted with these women and 18 cancer care providers. Data were analysed using frequencies and proportions and thematic analysis.
Impact on practice or Results: Most (86%) women reported having used T&CM, however, only 36% of women disclosed this to their care providers. Indigenous care providers demonstrated greater knowledge of T&CM than non-indigenous providers and those with little T&CM knowledge rarely asked patients about T&CM use. Care providers described creating a trusting environment and building rapport with Indigenous patients as important to discussing patients T&CM use.
Discussion or Conclusions: Identifying strategies to foster communication about T&CM between Indigenous cancer patients and their cancer care providers is required.
204 Identifying the supportive care needs of carers of Indigenous peoples with cancer in Australia, Canada, New Zealand and the United States: A systematic review
Tamara Butler1, Helena Martinez-Bredeck2, Adam Masa2, Kate Anderson1, Afaf Girgis3, Samar Aoun4, Joan Cunningham1, Claire Wakefield3, Shaouli Shahid5, Allan ’Ben’ Smith6, Gail Garvey1
1Menzies School of Health Research, Darwin, Australia;2Australian Catholic University, Brisbane, Australia;3University of New South Wales, Sydney, Australia;4La Trobe University, Melbourne, Australia;5Curtin University, Perth, Australia;6Ingham Institute for Applied Medical Research, Sydney, Australia
Background/rationale or Objectives/purpose: Caregivers provide critical unpaid support to Indigenous cancer patients, yet they rarely receive information or training for this role and may themselves benefit from support services. Regardless of their own cultural background, caregivers of Indigenous cancer patients must also navigate the interactions between Western biomedical approaches to cancer care and Indigenous peoples’ holistic views of wellbeing. Currently, little is known how best to support caregivers and what their needs are in caring for Indigenous cancer patients. The aim of this systematic review was to identify the supportive care needs of caregivers of Indigenous peoples with cancer in Australia, New Zealand, Canada and the United States.
Methodology or Methods: We systematically searched PsycINFO, MEDLINE, CINAHL, Embase, Scopus and Web of Science using keywords relating to Indigenous populations in Australia, Canada, New Zealand, and the United States; caregivers; and cancer. Data was extracted from original qualitative research articles published before November 2018.
Impact on practice or Results: Our analysis highlights key caregiver support needs including: caregiver's knowledge and understanding of cancer; sharing caregiver responsibilities; spirituality and rituals; awareness of service availability (especially respite services); communication between family and with health care services; financial support; and access to culturally-appropriate care.
Discussion or Conclusions: The findings indicate the need for a supportive care needs tool for caregivers of Indigenous cancer patients. These carers have multiple support needs and it is important to their wellbeing that these needs are appropriately identified and addressed. Ultimately, understanding the supportive care needs of caregivers of Indigenous cancer patients will contribute to improving health outcomes for Indigenous cancer patients.
202 A Scoping Review of Access to Cancer Care among Indigenous Peoples in Canada: Implications for Clinical Practice
Tara Horrill1, Janice Linton1, Josee Lavoie1, Donna Martin1, Allison Wiens2, Annette Schultz1
1University of Manitoba, Winnipeg, Canada;2CancerCare Manitoba, Winnipeg, Canada
Background/rationale or Objectives/purpose: The inequities in access to healthcare experienced by Indigenous peoples in Canada are startling given Canada's publicly funded and ‘equally accessible’ healthcare system. However, little is known about access to cancer care, and barriers to accessing cancer care in particular. A scoping study was conducted to identify what is known about barriers to accessing cancer care among Indigenous peoples in Canada, and where along the cancer continuum (screening, diagnosis, treatment, etc.) these barriers are encountered.
Methodology or Methods: SCOPUS, EBSCOhost, Google Scholar, Ovid MEDLINE and Ovid EMBASE were searched for studies published between 1996 and 2018 that examined access to cancer care for Indigenous peoples in Canada. 36 studies met inclusion criteria and were included in our analysis.
Impact on practice or Results: Indigenous peoples in Canada face barriers to accessing care at the individual patient or healthcare provider (HCP) level, at the systems level, and at the structural level. Poor communication between HCP and patients, and between healthcare settings (primary and speciality care) constituted barriers to accessing care. Histories of trauma and abuse among patients, and subsequent distrust of healthcare providers, were significant barriers to accessing cancer care. Poor understanding of and lack of attention to socioeconomic conditions, historical trauma and structural violence among HCP and within healthcare settings were also linked to inequitable access to cancer care.
Discussion or Conclusions: Indigenous peoples in Canada face unique barriers in accessing cancer care. Increased use of cultural safety and trauma-violence informed care perspectives in clinical practice may improve access to care among Indigenous peoples and other marginalized populations.
183 Indigenous Australians’ Experience of Cancer Care in the Northern Territory
Beverley Marcusson, Kate Anderson, Lisa Whop, Tamara Butler, Gail Garvey
Menzies School of Health Research, Brisbane, Australia
Background/rationale or Objectives/purpose: Despite advances in cancer detection and treatment, Indigenous Australians continue to experience significantly poorer cancer outcomes than non-indigenous Australians. Reasons for this disparity are complex; however, barriers to accessing and engaging with cancer treatment have been identified as possible drivers. Indigenous Australians living in the Northern Territory face additional challenges accessing cancer services due to geographic isolation and language and cultural differences. This study explored Indigenous Australian people's experience of cancer care at a major metropolitan hospital in the Northern Territory – particularly focusing on the factors impacting access to and engagement with treatment.
Methodology or Methods: Indigenous adults attending the hospital for cancer care were invited to participate in interviews conducted by a trained researcher to explore patients’ experiences of cancer care. Thematic analysis was undertaken to identify the factors that impact on patients’ ability to access and engage with cancer treatment
Impact on practice or Results: Seventy-five patients were interviewed. Thematic analysis identified that patients often missed appointments due to transport issues, family and community responsibilities back home and miscommunication with care providers. They also reported significant unmet needs, including lack of psychosocial support, financial stress, inappropriate accommodation, and lack of culturally-appropriate cancer information. The shock and stress of treatment was often overlaid by worries about family back home.
Discussion or Conclusions: This study identified significant challenges facing Indigenous people in the Northern Territory accessing and engaging with cancer care. The findings offer valuable information regarding how cancer services can adapt to more effectively meet the needs and improve cancer outcomes for Indigenous Australians.
147 The unmet supportive care needs of Aboriginal and Torres Strait Islander people with cancer in the Northern Territory of Australia
Abbey Diaz1, Sam Whitney2, Christina Bernardes3, Patricia Valery3, Giam Kar4, Gail Garvey1
1Menzies School of Health Research, Brisbane, Australia;2Menzies School of Health Research, Darwin, Australia;3QIMR Berghofer Medical Research Institute, Brisbane, Australia;4Alan Walker Cancer Care Centre, Darwin, Australia
Background/rationale or Objectives/purpose: Indigenous Australians experience a disparate burden of cancer compared to non-Indigenous Australians. Supportive care is a critical for optimal cancer care and improved cancer outcomes. We aimed to assess the unmet needs of Indigenous people newly diagnosed with cancer, from the Northern Territory, Australia.
Methodology or Methods: Indigenous adults diagnosed with cancer within the past 6 months and attending a major cancer care center in the Northern Territory were received the Supportive Care Needs Assessment Tool for Indigenous Peoples (SCNAT-IP) at baseline and 3 months. Participants reported the level of their unmet need for 26 items across four domains. Descriptive statistics were used to identify the items and domains for which participants most commonly reported unmet need, and how this varied across the two study time points.
Impact on practice or Results: At baseline, the most common unmet needs for the 46 participants (40% women; 51 years mean age) were: money worry (34%) and requiring an Indigenous support person (30%). At 3 months (n = 21), the most common unmet needs were: money worry (28%) and concerns about the worries of loved ones (28%). The proportion of patients reporting at least one unmet need reduced after the first needs assessment in the physical/psychological domain (52% reduced to 43%); hospital needs (17% to 0%); information/communication (35% to 29%); and the practical/cultural domain (65% to 33%).
Discussion or Conclusions: Northern Territory Indigenous cancer patients commonly experienced unmet need, particularly due to worry about the costs associated with cancer. The proportion of participants reporting unmet need reduced after completing the baseline needs assessment.
B. Children and adolescent cancer care
690 Social Information Processing and Social Adjustment in Survivors of Pediatric Brain Tumours
Courtney Charnock1, Mehak Sandhu2,3, Taryn Fay-McClymont4,5, Gregory Guilcher2,3,4, Lucie Lafay-Cousin2,3,4, Douglas Strother2,3,4, Keith Yeates1, Kevin Krull6, Fiona Schulte2,3
1Department of Psychology, University of Calgary, Calgary, Canada;2Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada;3Hematology, Oncology, Transplant Program, Alberta Children's Hospital, Calgary, Canada;4Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Canada;5Pediatric Neuropsychology Service, Alberta Children's Hospital, Calgary, Canada;6St; Jude Children's Research Hospital, Memphis, USA
Background/rationale or Objectives/purpose: Survivors of pediatric brain tumours (SPBT) experience significant, long-term deficits in social adjustment negatively impacting their quality of life. Social information processing (SIP) has been implicated in social adjustment in related populations (traumatic brain injuries; autism spectrum disorder). This study aims to investigate the difference between SIP in SPBT compared to healthy controls and explore the relationship between SIP and social adjustment in SPBT.
Methodology or Methods: SPBT(n = 12, 58% female, mean age = 12.67), and controls(n = 22, 50% female, mean age = 10.64) completed behavioural assessments and questionnaires examining SIP, and social adjustment. Conducted correlation, and t-test analyses were examined differences between SIP processes (theory of mind[ToM], affect recognition, working memory, processing speed, executive function, and attention) across groups, and their relationship to social adjustment.
Impact on practice or Results: SPBT performed significantly worse than controls on Affect Recognition, t(33) = -2.94, p = .006, and took significantly longer to complete the Affect Recognition test, t(33) = 5.33, p < .001. There were no significant differences in ToM, executive function, attention, or social adjustment between groups. Examination of relationships revealed a significant correlation between attention deficits and affect recognition, r = -.62, p = .041 in SPBT, but not controls (p > .05). No other significant relationships were found.
Discussion or Conclusions: Affect recognition is a key component of SIP and is compromised in SPBT compared to controls. Attention may be crucial role for affect recognition for SPBT. SPBT may have a unique profile compared to related populations, where SIP cannot account for or predict their social difficulties. This study has important implications for interventions to improve social adjustment in SPBT.
687 Peer Interactions, Social Acceptance, and Cognitive Late Effects are Critical in Pediatric Brain Tumor Survivor Outcomes
Payton L. Hummer1, Elizabeth Melfi1, Christina G. Salley2,3, Jennifer Kelleher1, Cynthia A. Gerhardt1,4, Keith Owen Yeates5, Brian Delaney6, Andrea F. Patenaude6, Maru Barrera7, Kathryn Vannatta8,4
1Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, OH, USA;2Department of Child and Adolescent Psychiatry, NYU School of Medicine, New York, NY, USA;3Hassenfeld Children's Hospital at NYU Langone, New York, NY;4Departments of Pediatrics and Psychology, The Ohio State University College of Medicine, Columbus, OH, USA;5University of Calgary, Calgary, Alberta, Canada;6Dana-Farber Cancer Institute, Boston, MA, USA;7Hospital for Sick Children, Toronto, Ontario, Canada;8Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, USA
Background/rationale or Objectives/purpose: Pediatric brain tumor survivors (PBTS) are at risk for peer-relationship difficulties. This research investigates links between social difficulties and cognitive late-effects that are often identified in PBTS and considered theoretically important for social competence.
Methodology or Methods: 191 PBTS (58% male, MAge = 11.95, SDAge = 2.2) and 135 Comparison Classmates (CC; 57% male, MAge = 12.3, SDAge = 2.2) from three North American hospitals completed school and home-based 1:1 assessments. Classmates (86% available in mainstream classrooms) completed the Revised Class Play (RCP) and Peer Acceptance (PA) ratings. PBTS and CC also completed measures of executive functioning (EF; Test of Everyday Attention for Children composite score) and processing speed (PSI; WISC-IV).
Impact on practice or Results: PBTS were lower in PA and RCP Leadership-Popularity, and higher in RCP Victimization and Sensitive-Isolated behavior, than CC (d's = 0.50-0.72, p's < .05). PBTS demonstrated poorer EF (d = 0.50) and PSI (d = 0.91) than CC. Regression analyses, with post-hoc bootstrapping tested indirect effects, found that EF, but not PSI, accounted partially for lower PA in PBTS. PSI did partially account for PBTS-vs-CC differences in Leadership-Popularity, Victimization, and Sensitive-Isolated behavior. EF also partially accounted for these RCP differences, but only for girls.
Discussion or Conclusions: Deficits in PSI and EF may help account for negative peer interactions for PBTS. Indirect effects involving EF were more often significant for girls than boys. Additionally, female, but not male, PBTS, experienced more Victimization than CC. Victimization places youth at risk for psychological and possible physical harm. Peer interactions, not just academic progress, warrant attention from parents, providers, and school personnel preparing Individualized Education Plans for PBTS who demonstrate cognitive deficits.
680 About difficulties of health professionals to evaluate and care of affective and behavioral problems of pediatric brain tumor survivors
Clémentine LOPEZ1,2, Kristopher LAMORE3,4, Serge Sultan3,4, Estelle FAVRE1, Cécile Flahault5,2
1Gustave Roussy,Psycho-oncology Unit, Villejuif, France;2Laboratory of Psychopathology and Health Psychology, Paris Descartes, paris, France;3CHU Sainte-Justine, Hematology—Oncology Department, Montréal, Canada;4University of Montreal, Department of Psychology, Montréal, Canada;5Gustave Roussy, Psycho-oncology Unit, Villejuif, France
Background/rationale or Objectives/purpose: Pediatric Brain tumors survivors (PBTS) present a higher risk for emotional and behavioral disorders. Differences in the methodology of the studies, complex links with cognitive sequelae, but also the overlapping of symptoms and the lack of consensus on the reference framework may complicate their characterization and their identification by the clinicians. These observations led us to question health professionals about the difficulties they encounter to evaluate and manage these patients.
Methodology or Methods: We conducted a practice survey between February and April 2018. We sent by email a questionnaire and a clinical case to different clinicians to assess their possible difficulties.
Impact on practice or Results: Thirty participants answered the questionnaire and 18 the clinical case. The majority (93.3%) find that the emotional and behavioral disorders are difficult to assess due to the overlapping of symptoms. All participants are in favor of creating a tool to help diagnosis. A majority (66.6%) emphasizes the interest of a dimensional approach. In the clinical case, the diagnostics mentioned, the complementary assessments and care proposed are very varied. All participants believe that the emotional and behavioral difficulties described may be related to cognitive sequelae.
Discussion or Conclusions: The overlapping of symptoms, the great variability of clinical presentations complicates the categorical approach. The dimensional approach could allow a more accurate description of the difficulties but would complicate exchanges between professionals. Define clusters of patients based on affective, behavioral and cognitive dimensions, while taking into account medical parameters, could allow to create a specific tool to facilitate the identification and management of psychopathological disorders of PBTS.
662 Social-affective abilities linked to peer relationship difficulties in children treated for brain tumors: Evidence of deficits that differentially impact female survivors
Elizabeth Melfi1, Payton L. Hummer1, Christina G. Salley2,3, Jennifer Kelleher1, Cynthia Gerhardt1,4, Keith Owen Yeates5, Brian Delaney6, Andrea F. Patenaude6, Maru Barrera7, Kathryn Vannatta1,4
1Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, USA;2Department of Child and Adolescent Psychiatry, NYU School of Medicine, New York, USA;3Hassenfeld Children's Hospital at NYU Langone, New York, USA;4Departments of Pediatrics and Psychology, The Ohio State University College of Medicine, Columbus, USA;5University of Calgary, Calgary, Canada;6Dana-Farber Cancer Institute, Boston, USA;7Hospital for Sick Children, Toronto, Canada
Background/rationale or Objectives/purpose: Pediatric brain tumor survivors (PBTS) demonstrate social difficulties, but little research examines social-affective skills that could contribute to such deficits. This research examines peer relationship difficulties in relation to social-affective skills and investigates differences for male and female PBTS.
Methodology or Methods: 191 PBTS (58.6% male, Mage = 12.3, SDage = 2.3) and 135 Comparison Classmates (CC; 57.1% male, Mage = 12.2, SDage = 2.3) from three North American hospitals completed school and home-based 1:1 assessments. Classmates (86% of those available in mainstream classrooms) completed the Revised Class Play (RCP) and Peer Acceptance (PA) ratings. PBTS and CC completed the Emotional and Emotive Faces task assessing understanding of Emotional Experience during social interaction (EE), Emotive Communication (EC; manipulation of expressions to convey alternative feelings), and Concealment (motivations to manipulate expression of inner feelings). Regressions tested overall and contingent indirect effects using post-hoc bootstrapping.
Impact on practice or Results: PBTS demonstrated lower PA and RCP Popularity-Leadership, and higher RCP Sensitive-Isolated behavior. Female, not male, PBTS were higher in RCP Victimization than CC (d's = 0.50–0.72, p < .05). PBTS demonstrated significant deficits in Concealment and EE (d's = 0.24–0.53, p < .05). Indirect effects, partially accounting for PBTS peer-relationship difficulties, were found for EE and EC, but almost exclusively for girls. For example, EE and EC accounted for PBTS-vs-CC differences in Victimization for girls, but not boys.
Discussion or Conclusions: Research is needed to further delineate social-affective skills that account for peer relationship difficulties for PBTS that could be targets for intervention development. Social-affective skills warrant particular attention for female PBTS for whom they may trigger negative peer-interactions that demonstrate links to later psychological morbidity.
636 Delay in diagnosis of cancer in children and adolescents: what can we learn from patients and their parents? The DIASTEM study
Léonor Fasse1,2, Kristopher Lamore3, Dominique Valteau2, Nathalie Gaspard2, Jean-François Brasme4, Martin Chalumeau5,1
1Université Paris Descartes, Paris, France;2Hôpital Gustave Roussy, Villejuif, France;3Université de Montréal, Montréal, Canada;4CHU Angers, Angers, France;5INSERM U1153, Port Royal, Paris, France
Background/rationale or Objectives/purpose: Cancer in children is often diagnosed after a period of weeks or months during which symptoms develop. Their consequences on the seriousness of the disease and on survival and sequelae vary, but for many types of tumors, no consequences have been proved. Nevertheless, this delay may have major psychological consequences on the children and their parents. This study aims to investigate the subjective representations and experience of children with cancer and their parents regarding delay in diagnosis.
Methodology or Methods: Semi-structured interviews were separately conducted in children/adolescents and their parents. Discussions were audio recorded, anonymized and transcribed verbatim. We used a thematic analysis approach to identify patterns and themes (Thomas, 2006).
Impact on practice or Results: Results: Twenty children/adolescents (m age = 13 years) and 21 parents (m age = 42 years) were recruited. In interviews with children, 8 major themes (e.g. “self-identity”, “life without illness”) were identified, among them the diagnosis delay is finally rarely mentioned. Six major themes emerged during parents’ interviews, including “giving meaning to the cancer experience” and “discrepancies within the couple”. Within these, the analysis described the difficulty in talking about the disease in the family.
Discussion or Conclusions: Our results mitigate the representation that children with cancer and their parents report critical distress related to the perception of a diagnosis delay. These findings offer insights on other causes of distress during the diagnostic period and will be used to build a questionnaire dedicated to the screening vulnerable children and parents at the beginning of treatment of the disease.
613 Baseline Characteristics of Pediatric and Young Adult Patients with Medullary Thyroid Cancer and MEN-2B: Data from the Rare Tumor Initiative at the National Cancer Institute
Taryn Allen1, Sima Zadeh Bedoya2, John Glod2, Brigitte Widemann2, Lori Wiener2
1Clinical Research Directorate, Leidos Biomedical, Inc, Frederick, USA;2National Cancer Institute, National Institutes of Health, Bethesda, USA
Background/rationale or Objectives/purpose: Medullary thyroid carcinoma (MTC) is a rare malignancy associated with the familial cancer syndrome multiple endocrine neoplasia (MEN) 2A or 2B. MEN-2B is a more aggressive subtype, associated with multiple morbidities. The current study examined psychosocial functioning in pediatric and young adults with MTC and MEN-2B.
Methodology or Methods: Patients with MTC and MEN-2B (N = 53; 46% male) were enrolled in a natural history study and administered a psychosocial assessment and modified Distress Thermometer at baseline. Caregivers (N = 47; 69% mothers) completed parallel forms.
Impact on practice or Results: Most patients (age M = 14.4 years, SD = 4.89) described their overall health as “good” to “excellent,” though about 30% of adults and 50% of youth reported pain at least a few times a week, which interfered with everyday activities. Nearly half of adult patients endorsed symptoms of anxiety and a third reported symptoms of depression. Just under 50% of caregivers indicated their child received mental health treatment at some point, with 26% of patients being prescribed psychiatric medication. Patients also endorsed positive changes following diagnosis, including more confidence in their ability to handle stressors (85%) and knowledge that they can count on others in times of need (88%). When asked about interest in services, youth most strongly endorsed an interest in meeting others with MTC, whereas adults reported a preference for more education about their health condition.
Discussion or Conclusions: Results suggest physical and psychological vulnerabilities in AYA with MTC and MEN-2B. Future research should evaluate how concerns change over time. Behavioral interventions to support psychosocial functioning are indicated for this at-risk population.
584 The development and user evaluation of a health behaviour change intervention for AYA cancer survivors
Gemma Pugh1, Rachael Hough2, Helen Gravestock3, Cassie Davies3, Abigail Fisher4
1Queen Mary University London, London, United Kingdom;2University College London Hospital, London, United Kingdom;3CLIC Sargent, London, United Kingdom;4University College London, London, United Kingdom
Background/rationale or Objectives/purpose: A lifestyle intervention designed specifically for AYA cancer survivors is likely to be effective only if it's tailored to patient need and feasible for delivery within the existing health-care system. To inform the development of a lifestyle intervention for AYAs a series of studies were carried out with both patients and professionals.
Methodology or Methods: Quantitative and qualitative data on AYA (n = 267) current health behaviour status; interest in, and experience of receiving, lifestyle advice; and delivery preferences of a lifestyle intervention was gathered. Health professionals (n = 95) were surveyed to explore promoting health behaviour change in AYAs. Subsequently, health behaviour change intervention resources containing comprehensive lifestyle information and behaviour change support tools were developed. These underwent evaluation by AYA and AYA health professionals’ (n = 37) for relevance, appeal and usability.
Impact on practice or Results: AYA survivors demonstrated a desire for age-appropriate lifestyle information on a range of topics (physical activity, diet, smoking, alcohol consumption, sun safety, late effects management) delivered in multiple formats, and at various time-points throughout the cancer pathway. Health professionals were interested in a resource that could be given to patients within their care but noted multiple barriers to addressing health behaviour in routine practice. The intervention resources were well received with the majority rating the information as high quality, helpful and relevant. Over 80% of AYA reported the behaviour change support tools were ‘very appealing’ or ‘quite appealing’.
Discussion or Conclusions: Engaging AYA and AYA representatives in intervention development is predicted to address issues of low uptake and adherence in formal piloting and evaluation.
569 Whether and why AYA cancer patients choose to learn about their terminal disease conditions –a qualitative study–
Saran Yoshida1, Ken Shimizu2, Motohiro Matsui3, Yosuke Uchitomi4, Maiko Fujimori5, Keizo Horibe6
1Graduate School of Education, Tohoku University, Sendai, Japan;2Department of Psycho-Oncology, National Cancer Center Hospital, Tokyo, Japan;3Department of Hematological Tumor Internal Medicine, Tokyo Metropolitan Children's Medical Center, Tokyo, Japan;4Innovation Center for Supportive, Palliative and Psychosocial Care, National Cancer Center Hospital, Tokyo, Japan;5Cancer for Public Health Sciences, National Cancer Center, Tokyo, Japan;6Clinical Research Center, Nagoya Medical Center, Nagoya, Japan
Background/rationale or Objectives/purpose: Telling a terminal disease condition is an important, but a difficult task for physicians, especially when working with young patients. One of the barriers for physicians is their lack of knowledge about patient preferences regarding such a disclosure. The purpose of this study was to examine the preference for disclosure and its reason for/against the disclosure of terminal condition to AYA (adolescent and young adult) patients.
Methodology or Methods: We conducted semi-structured interviews for patients who were diagnosed with cancer during 15–29 years old. The main questions were as follows: 1) would you like to know your own terminal disease condition if the anti-cancer treatments are no longer effective? and 2) why?
Impact on practice or Results: Seven categories were extracted as reasons for disclosure, including “I want to consider treatment plans based on the correct disease condition” and “Not having such a discussion will let me feel distrust toward the physician.” At the same time, six categories were extracted as reasons for non-disclosure, such as “I can recognize the disease condition without direct disclosure” and “Information about terminal disease conditions deprives me of hope.” Both young adults and adolescents remarked positive statements for engaging in discussions with physicians about their terminal conditions.
Discussion or Conclusions: The reasons why AYA patients either prefer or do not prefer to know about their true disease conditions were similar to those for adult patients. Since there exist several limitations, further studies are needed for the AYAs with terminal disease condition regarding their preferences.
548 Analysis of self-actualization of cancer patients in onco-stationary
Scientific Center of Pediatrics and Pediatric Surgery, Almaty, Kazakhstan
Background/rationale or Objectives/purpose: Analysis of the personal resources of cancer patients in adolescents is being studied with a focus on the process of self-actualization during the treatment period in the onco-hospital, with the aim of disclosing internal psychological resources and establishing cooperative relations with parents and doctors.
Methodology or Methods: 42 cancer patients of adolescents (34 girls, 8 boys) at the age of 15–17 years old, were diagnosed according to the «Self-Actualization Test (SAT)» method (L.Gozman, M.Latinskaya, M.Kroz,1995).
Impact on practice or Results: Depending on the objectives of our study, the test will be partially interpreted:
base scales «Competence in time» and «Support/Self-reliance»,
selective analysis of individual additional scales: «Behavior flexibility» and «Contact».
34% of subjects had average scores, 66% - low. Low level of self-actualization on scales:
«Competence in time»: teenager lives in the past, suffers from remorse for his misdeeds, keeps the wrongs inflicted on him, feels fear for his life;
«Support»: teenager with cancer doesn‘t have own internal motivation and is subject to external influence.
Analysis of individual additional scales showed: 65% of subjects had average scores, 35% - low. Consequently, on the scale of «Behavior flexibility», teenagers with cancer interact with other people and are able to adequately respond to a changing situation. The scale of «Contact» characterizes the ability of adolescents to establish emotionally-saturated contacts and «subject-subject» communication.
Discussion or Conclusions: Teenagers with cancer are not self-actualizing individuals and do not know nor see their potential and doubt their abilities.
546 Health literacy in adolescents and young adults with cancer (AYAs) and their families: Qualitative findings from interviews with healthcare professionals
Danielle Gessler1,2,3, Ursula Sansom-Daly4,5,6, Pandora Patterson7,8, Melissa Noke8, Danielle Muscat9, Heather Shepherd1,2,3, Ilona Juraskova1,2,3
1School of Psychology, The University of Sydney, Sydney, Australia;2Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, Sydney, Australia;3Psycho-Oncology Cooperative Research Group (PoCoG), School of Psychology, The University of Sydney, Sydney, Australia;4Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, Australia;5Discipline of Paediatrics, School of Women's and Children's Health, UNSW Sydney, Sydney, Australia;6Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospital, Randwick, Australia;7Cancer Nursing Research Unit, The University of Sydney, Sydney, Australia;8CanTeen Australia, Sydney, Australia;9Sydney Health Literacy Lab, School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
Background/rationale or Objectives/purpose: Adolescents and young adults with cancer (AYAs) engage in decision-making interactions with both their families and clinicians where health literacy skills may be required. However research is yet to explore health literacy in this context. We aimed to investigate healthcare professional perspectives on: i) how AYAs and their families are involved in processes of information sharing and decision-making, ii) health literacy within this group, and iii) strategies that clinicians use for improving triadic decision-making.
Methodology or Methods: Semi-structured qualitative interviews were conducted with healthcare professionals working with AYAs aged 15–25 years old, including oncologists, general medical practitioners, nurses, psychologists and social workers. Interviews were recorded and transcribed, to allow for coding and thematic analysis.
Impact on practice or Results: All healthcare professionals reported engaging in clinician-patient-family communication processes regarding treatment decisions, associated healthcare decisions, social or lifestyle decisions (i.e., fertility preservation), participation in a clinical trials, and end of life decisions. Family members used health literacy skills to: i) contribute to knowledge about the AYAs condition and management, ii) activate the AYA, iii) help them negotiate their options prior to a decision, and iv) give support in shared decisions.
Discussion or Conclusions: This research is the first important step in the development of novel decision support tools to enhance patient- and family-centred healthcare for AYAs that recognise health literacy skills distributed within families. By better understanding the facilitators and barriers of effective communication and the process of decision-making, researchers can develop informed and relevant tools and strategies that address AYAs needs in this unique setting.
539 Differences In Body Mass Index Between Families Of Survivors Of Pediatric Cancer And Healthy Controls
K. Brooke Russell1, Lindsey Trépanier1, Erin L. Merz2, Fiona Schulte1, Lianne Tomfohr-Madsen1
1University of Calgary, Calgary, Canada;2California State University, Dominguez Hills, Carson, USA
Background/rationale or Objectives/purpose: The survival rate for childhood acute lymphoblastic leukemia (ALL) is above 90% in high-income countries. However, a recent meta-analysis found survivors of childhood ALL (SC-ALL) th percentile, significantly higher than combined sibling, control, and norm reference populations, and independent of treatment, gender, and age at diagnosis. This suggests psychosocial factors may contribute to risk of higher BMI in this population. As such, it is possible that differences in BMI exist at a familial level. This study investigated differences in BMI among families of SC-ALL, in comparison to healthy control families.
Methodology or Methods: Families of SC-ALL (n = 45; survivor, sibling, parent) and control families (n = 45; two siblings, parent) were recruited as part of a larger study. Participants had their height and weight measured by the study team. Data were analyzed using multilevel modeling to account for participants nested within families.
Impact on practice or Results: There was a significant effect of family type (survivor; control) on BMI, after controlling for age, gender, and family membership, t (78.71) = 4.49, p < .001, such that survivor families had a significantly higher mean BMI (m = 23.49), than control families (m = 20.17).
Discussion or Conclusions: These data suggest that risk for higher BMI in SC-ALL extends to broader family structures. Potential associations with physical activity and family habits will be discussed. Future research should explore possible psychosocial mechanisms that may contribute to higher BMI in SC-ALL and their families.
487 Reliability and validity of the French version of the Transition Readiness Assessment Questionnaire (TRAQ-Fr) using a multi-informant approach
Pascale Chapados1, Jennifer Aramideh1,2, Tziona Lugasi1,2, Émilie Dumont1,2, Kristopher Lamore1,2, Caroline Laverdière3, Marie-José Clermont3, Sophie Laberge3, Rachel Scott3, Serge Sultan1,2,3
1Department of Psychology, University of Montreal, Montreal, Canada;2Sainte-Justine University Health Center, Montreal, Canada;3Department of Pediatrics, University of Montreal, Montreal, Canada
Background/rationale or Objectives/purpose: Approximately 90% of youth suffering from chronic conditions (including cancer) will survive into adulthood and transition from pediatric to adult care. This transition needs to be optimal since a suboptimal transition can lead to severe consequences. To measure adolescent and young adult (AYA) patients’ transition readiness, the Transition Readiness Assessment Questionnaire (TRAQ) was developed. We aimed to document the 1) construct validity, 2) internal consistency, and 3) absolute agreement between patients’ and parents’ reports on the French adaptation of the TRAQ (TRAQ-Fr).
Methodology or Methods: French-speaking AYA patients from a large tertiary hospital (n = 175; diagnosed with either cancer [n = 71], diabetes, cystic fibrosis, epilepsy, or renal pathology) and their parents (n = 168) were asked to complete the TRAQ-Fr. To examine the TRAQ-Fr's construct validity, confirmatory factor analyses (CFAs) were conducted. To determine its internal consistency, Cronbach's alpha coefficient was calculated. Finally, to investigate the absolute agreement between patients’ and parents’ scores on the TRAQ-Fr, intra-class correlations, paired t-tests, and Cohen's d were performed on 138 parent-child dyads.
Impact on practice or Results: The CFA models showed acceptable fit suggesting that the TRAQ-Fr supports the TRAQ's factorial structure. The TRAQ-Fr was found to have good overall internal consistency with Cronbach's alphas of .85 and .87 for patients and parents respectively. Patient and parent reports showed good absolute agreement with Cohen's d ranging from .03 to .32.
Discussion or Conclusions: The TRAQ-Fr was found to have good construct validity, internal consistency, and absolute agreement. The results support further use of the TRAQ-Fr among both AYA patients and their parents.
473 Maternal emotional distress in Russian pediatric oncology/hematology: sociodemographic factors associated with distress score and problem domains
Tatiana Ryabova1,2, Natalia Klipinina1, Natalia Nikolskaya1, Ekaterina Stefanenko1, Ekaterina Shutkova1, Alina Khain1
1Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russian Federation;2Russian State University for the Humanities, Moscow, Russian Federation
Background/rationale or Objectives/purpose: There is a lack of information about the representation of problem areas and cultural specificity of maternal emotional distress in pediatric oncology/hematology in different countries. In most non-English countries the critical value of DT equals to four points is used and the choice of other values depends on the country, language and clinical features of the patient sample (Donovan et al., 2014).The aim of this study was to describe socio-demographic and culture-bound factors of emotional distress in Russian mothers of children with oncological/hematological diseases.
Methodology or Methods: 153 caregivers were included in the study. Psychometric assessment tools for mothers were DT-P and SCl-90-R.
Impact on practice or Results: The optimal cut-off score equals to five was found by the ROC analysis (AUC = 0.781, SE = 0.039; 95% CI, 0.70–0.86; p = .01). The strongest correlations of distress with Emotional (r = .469, p≤.01) and Practical (r = .239,p≤.01) problems were found. Symptom frequencies were calculated: Anxiety (79.2%), Fatigue (32.9%), Sleep (17.4%), Family Problems (12.4%), Prayer (8.7%). On average, Emotional (92.2%), Physical (58.4%) and Practical (53%) problems were most often common. Neither the caregivers’ age nor the duration of hospital stay were correlated with DT-P and SCL-90-R subscales.
Discussion or Conclusions: The optimal cut-off score equals to five was found for mothers in Russia. It turned to be higher than in the Dutch study (Haverman et al., 2013). This reflects the socio-cultural characteristics of Russian maternal population: a peculiar social desirability of anxiety about their children's health. The reported study was funded by RFBR according to the research project № 19–013-00682.
467 The level and problem domains of emotional distress in Russian pediatric oncological/hematological patients: cultural specifics and socio-demographic factors
Tatiana Ryabova1,2, Natalia Klipinina1, Natalia Nikolskaya1, Ekaterina Stefanenko1, Ekaterina Shutkova1, Alina Khain1
1Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russian Federation;2Russian State University for the Humanities, Moscow, Russian Federation
Background/rationale or Objectives/purpose: Non-English versions of the DT usually use the cutoff score equals to four, however, this value depends on the country, language and clinical characteristic of patients (Donovan et al., 2014).The aim of this study was to describe socio-demographic and culture-bound factors of the emotional distress of Russian pediatric oncological/hematological patients.
Methodology or Methods: 159 patients aged 7–17 with cancer and blood disorders were assessed by the DRS self-report and CDI by M. Kovacs. The ROC analysis was used to identify the cutoff score.
Impact on practice or Results: The cutoff score equal to four was found optimal for pediatric patients aged 7–12 years, and equal to three for patients aged 13–17 years. The correlations between the distress rating and problem domains were found for Physical (r = .405, p≤.01) and Emotional (r = .610, p≤.01) problems. The symptoms’ distribution was also evaluated. Differences in the distress rating associated with the disease duration and the gender were found only in a group of adolescents 15–18 years. We found that the distress rating and the caregiver's age, patient's age and Emotional problems, the caregiver's age and the Physical problems were inversely correlated.
Discussion or Conclusions: The specifics of distress in Russian pediatric population include Physical and Emotional problems and such socio-demographic factors of distress as the disease duration and the caregiver's age. It can be taken into account to identify distress's risk groups and to organize the psychological support for Russian oncological/hematological pediatric patients.The reported study was funded by RFBR according to the research project №19-013-00682.
448 Information needs of patients and survivors with young-onset colorectal cancer: An interpretive description study
Genevieve Breau1, Jonathan Loree2, Sharlene Gill2, Helen McTaggart-Cowan2, Hallie Dau1, Louise Gastonguay1, Mary A. De Vera1
1University of British Columbia, Vancouver, Canada;2British Columbia Cancer Agency, Vancouver, Canada
Background/rationale or Objectives/purpose: The burden and risk of young-onset colorectal cancer (yCRC) in those diagnosed before the age of 50 years, is rapidly increasing in Canada. There is limited research exploring how colorectal cancer patients and survivors of all ages access information regarding their diagnosis and treatment, and very little has been conducted in the unique subgroup of young-onset colorectal cancer survivors. The aim of this qualitative study is to explore how yCRC patients and survivors access information and support during treatment and survivorship, and whether their information needs are satisfied.
Methodology or Methods: This interpretive description study is seeking to recruit 20–30 patients and survivors from a larger, international, cross-sectional survey study our team is currently conducting regarding how patients seek out information regarding their cancer diagnosis and treatment. Canadian participants are currently being recruited to participate in semi-structured interviews, and analysis is ongoing.
Impact on practice or Results: We expect yCRC patients and survivors to have information needs that are met both by online and in-person modalities, and we expect patients seek out information and advocate for themselves. We also wish to gather information on which forms of online support groups would be palatable to this group.
Discussion or Conclusions: By identifying the information and support needs of yCRC patients and survivors, researchers including our group can develop informational materials targeted at this group, and clinicians would be able to distribute these resources. We will also utilize these data to assist in developing an online portal for these patients.
397 Emotional distress among parents of children diagnosed with cancer: Association with problem-solving skills and perceived competence to face the illness
Kristopher Lamore1,2, David Ogez1,2, Katherine Peloquin2, Daniel Curnier1,3, Valérie Marcil1,4, Émélie Rondeau1, Daniel Sinnett1,4, Serge Sultan1,2
1Sainte-Justine University Health Centre, Montréal, Canada;2Departement of psychology, Université de Montréal, Montréal, Canada;3Department of kinesiology, Université de Montréal, Montréal, Canada;4Departement of pediatrics, Université de Montréal, Montréal, Canada
Background/rationale or Objectives/purpose: Parents of children diagnosed with cancer are at high risk for distress and can have difficulties in problem-solving. Interventions have been implemented to increase parents’ problem-solving skills and decrease emotional turmoil. However, we don’t know to what extent problem-solving skills may contribute to emotional distress. We aimed to (1) assess the contribution of problem-solving skills and perceived competence to emotional distress, and (2) explore the differences between mothers and fathers in this contribution.
Methodology or Methods: Ninety-nine parents (56 mothers and 43 fathers) of childhood cancer patients filled-out questionnaires on problem-solving skills (SPSI-R), perceived competence to face cancer (PCS adapted), mood disturbance (POMS-SF) and perceived stress (PSS), one year after the end of treatments. Multiple regression analysis was used to estimate the unique contribution of problem-solving skills and perceived competence to emotional distress. Models were secondarily compared in mothers and fathers separately.
Impact on practice or Results: Mothers had significantly higher levels of perceived stress compared to fathers. No significant differences were observed on others measures. Low problem-solving skills and perceived competence to face cancer were significantly associated with higher levels of mood disturbance and perceived stress in both mothers and fathers. These variables contributed significantly and respectively to 26% and 45% variation in mood disturbance and perceived stress. Sex only contributed to mood disturbance (p < .05).
Discussion or Conclusions: Parents’ distress, particularly perceived stress, probably depends heavily on problem-solving skills and perceived competence. These results support the need to enhance problem-solving skills in parents of children treated for cancer and improve sense of control to further optimize emotional adjustment.
372 Identifying self-management strategies used by childhood cancer survivors
Linda Sharp1, Anna Haste1,2, Vera Araujo-Soares1, Roderick Skinner3,1, Linda Sharp1
1Newcastle University, Newcastle upon Tyne, United Kingdom;2Teesside University, Middlesborough, United Kingdom;3Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, United Kingdom
Background/rationale or Objectives/purpose: Childhood cancer survivors (CCSs) are at increased risk of chronic health problems. Effective self-management could help CCSs cope with the challenges that accompany survivorship, and reduce their risk of developing further health problems. There is little evidence about the extent to which CCSs engage in self-management and the specific strategies they use. This study aimed to identify strategies that CCSs use to manage the consequences of cancer in their everyday lives.
Methodology or Methods: Twenty-four CCSs (median age 23 years) were recruited via outpatient follow-up clinics. Participants underwent a semi-structured interview. Interviews were audio-recorded and transcribed. Directed content analysis (deductive and inductive) was used to identify and code self-reported self-management strategies and categorise them into self-management types
Impact on practice or Results: CCSs reported 116 specific self-management strategies which were categorised into 20 self-management strategy types. All CCSs used several self-management strategy types (median 13; range 6–18) and specific self-management strategies (median 35, range 13–52). The most frequently reported strategy types were: ‘adopting a healthy lifestyle’ (n = 24), ‘self-motivating’ (n = 24), ‘using support’ (n = 24), and ‘reasoned decision making’ (n = 24). The most common specific self-management strategies were: ‘receiving family support’ (n = 20), ‘attending follow-up and screening appointments’ (n = 20), ‘thinking objectively about negative health behaviours’ (n = 19), and ‘undertaking physical activity’ (n = 18).
Discussion or Conclusions: This is the first study to focus on CCSs’ own reports of the strategies they employ to look after their health and wellbeing. These findings can inform the development of supported self-management interventions for CCSs in follow-up care.
359 Pilot study of TAKING BACK CONTROL TOGETHER: Feasibility and measure of change of a supportive intervention program with parents whose children are being treated for cancer
David Ogez1,2, Kristopher Lamore1,2, Katherine Peloquin2, Daniel Curnier1,3, Valérie Marcil1,4, Daniel Sinnett1,5, Serge Sultan1,2,5
1Sainte-Justine University Health Center, Montreal, Canada;2Department of psychology, Université de Montréal, Montreal, Canada;3Department of kinesiology, Université de Montréal, Montreal, Canada;4Department of Nutrition, Université de Montréal, Montreal, Canada;5Department of Pediatrics, Université de Montréal, Montreal, Canada
Background/rationale or Objectives/purpose: This study aims to pilot-test a manualized program to support parents in pediatric-oncology. The program is a combination of the best existing evidence in the field. We aimed to assess (1) feasibility and (2) pre-post-follow-up changes associated with this program.
Methodology or Methods: Two studies were conducted. Firstly, 6 parents and 6 healthcare-professionals participated in a mixed-study (questionnaires and focus-groups) to assess TAKING BACK CONTROL TOGETHER's pertinence and materials (e.g., manuals). Secondly, 20 parents couples were invited to complete the 6-sessions program (4 individual problem-solving training sessions and 2 couple sessions in dyadic coping), starting four weeks after cancer diagnosis. Measures included self-reported distress (POMS-SF), problem-solving skills (SPSI-R) and dyadic coping (DCI) in pre-, post- and 3-months follow-up. We collected social validity assessments on the program (Kazdin scale). Thematic content analysis, Cohen's d and non-parametric tests were performed on qualitative and quantitative data respectively.
Impact on practice or Results: The program was redesigned according to improvement suggestions collected in the first study (e.g., adaptation to different cultures). The pilot study yielded high satisfaction from participants (75 ± 13%) and reduction in distress, as well as improvement in problem-solving skills and dyadic coping (medium to large d effect sizes).
Discussion or Conclusions: This study demonstrated that the program was feasible and well accepted. We observed encouraging preliminary results that need to be confirmed in larger-scale trials. This study's results aim to provide clinicians with a program that has potential to prepare parents for their child's cancer treatment by allowing them to better control the situation.
348 Feasibility of an exercise program and hypnosis therapy in children with leukemia and lymphoma during the first three months of oncology treatment: a study protocol in Uruguay
Mariana Gómez1, Paloma Amarillo2,3, Carlos Magallanes1, Nicole Culos-Reed4,5,6, Luis Alberto Castillo7,3, Gustavo Dufort7,3, Flavia Chamorro Viña2, Yoandre Baudín Azcaris8, Carolina Chamorro Viña9,4
1Instituto Superior de Educación Física, Universidad de la República, Montevideo, Uruguay;2Facultad de Medicina, Universidad de la República, Montevideo, Uruguay;3Fundación Pérez Scremini, Montevideo, Uruguay;4University of Calgary, Faculty of Kinesiology, Calgary, Canada;5Alberta Health Services, Cancer Care, Tom Baker Cancer Centre, Department of Psychosocial Resources, Calgary, Canada;6University of Calgary, Department of Oncology, Cumming School of Medicine, Calgary, Canada;7Centro Hospitalario Pereira Rossell, Montevideo, Uruguay;8Universidad de Ciencias Medicas, Santiago de Cuba, Cuba;9Kids Cancer Care Foundation of Alberta, Calgary, Canada
Background/rationale or Objectives/purpose: Objectives: Determine feasibility and potential benefit of an exercise program (EP) and hypnosis therapy (HT) during the first three months of treatment in pediatric patients diagnosed with leukemia and lymphoma.
Methodology or Methods: Methods: This pilot study will seek to recruit 30 newly diagnosed children (4–14 years old), for two phases (I, II). Phase (I) in-hospital: Two arms compared over 30 days. Participants in arm (IA) will engage in an individualized/supervised EP (strength, balance, flexibility and aerobic exercises), 5 times/week. Participants in arm (IB) will receive HT 2 times/week with a focus on treating anxiety, pain and nausea. Phase (II) combined in-hospital/home-based: Both arms will complete a combined intervention of supervised in-hospital/home-based EP and HT for 60 days. Outcomes: Feasibility (recruitment and adherence), motor development (MOON test), functional capacity (TUG), quality of life and fatigue (PedsQL cancer module and fatigue). Assessments conducted at 3 time points (baseline, day 31, day 92). Statistical analysis. Phase I will compare differences in all outcomes between arms A and B using SPSS/Mann-Whitney test. Phase II pre–post-test will be performed for all outcomes using SPSS/paired t-tests.
Impact on practice or Results: Project underway
Discussion or Conclusions: Conclusions and clinical implications: This is the first study of this type of intervention in Uruguay. The study will add evidence for the feasibility of HT and EP as adjuvant therapies during treatment. A subsequent multi-center study will aim to include all diagnoses as a way to incorporate EP and HT as part of standard care in pediatric oncology in Uruguay.
334 Trajectories of psychosocial risk in families of children newly diagnosed with Cancer
Maru Barrera1, Aden Solomon1, Leandra Desjardins1, Joanna Chung2, Sarah Alexander1, Wendy Shama1, Denise Mills1, Kelly Hancock1
1The Hospital for Sick Children, Toronto, Canada;2BC Women and Children's Hospital, Vancouver, Canada
Background/rationale or Objectives/purpose: There is limited information regarding the psychosocial trajectories of families in pediatric cancer. We examined early trajectories of psychosocial risk in families with children newly diagnosed with cancer using the Psychosocial Assessment Tool (PAT, Universal, Targeted, Clinical risk levels).
Methodology or Methods: Families were randomly allocated to an intervention (IG, PAT summary profile provided to patient treating team) or control group (CG, no summary provided) in two pediatric cancer centers. Caregivers (N = 122) of newly diagnosed children completed the PAT along with outcome measures as part of a larger study at 2–4 weeks (T1) and 6 months after diagnosis (T2). McNemar-Bowker and Chi-square tests were used for analyses. IG and CG groups didn’t differ significantly in terms of PAT risk level and therefore their data were merged.
Impact on practice or Results: The distribution of families across the PAT risk levels did not differ significantly between T1 and T2 (p > .05); 63% remained within the same PAT risk level across time. A subgroup of families in the Universal risk level at T1 significantly moved to targeted (28%) or clinical (2%) risk levels at T2. Similarly, a subgroup of families in the Targeted risk level at T1 significantly moved to Universal (34%) or clinical (13%) risk levels at T2 (ps < .01).
Discussion or Conclusions: While psychosocial risk remained relatively consistent for the majority of families, a substantial number of families within Universal or Targeted risk levels at T1 are likely to change risk level overtime. This information supports periodical routine assessment, which may be critical for re-allocating psychosocial intervention resources.
315 Physical activity for children with cancer: the parental perspective
Sarah Grimshaw1,2, Nora Shields2, Nicholas Taylor2, Francoise Mechinaud1
1Murdoch Children's Research Institute, Melbourne, Australia;2La Trobe University, Melbourne, Australia
Background/rationale or Objectives/purpose: Children receiving treatment for cancer are inactive and there is little known about the best ways to facilitate their participation in physical activity.
This study aimed to understand from the parents’ perspective, the physical activity experiences of children undergoing cancer treatment. A specific objective was to better understand barriers and facilitators of physical activity.
Methodology or Methods: This study was completed using qualitative methods. Data were collected via semi-structured interview with parents of children who were in their first year of treatment, including hematopoietic stem cell transplantation. Data were analysed using thematic analysis.
Impact on practice or Results: Twenty parents were interviewed (17 mothers, 3 fathers; with children aged 4–17, with a variety of cancer diagnoses). A framework was developed to represent how cancer diagnosis and subsequent treatment can negatively affect a child's physical activity. Parents described the cancer itself, adverse treatment side effects and the treatment environment as contributing factors to inactivity. Parents communicated these effects went beyond physical function, describing that children experience a loss of independence, isolation and reduced motivation that adversely impacts their global well-being. Parents described an inability of children and themselves to overcome the barriers to physical activity without support from their oncology team.
Discussion or Conclusions: The reasons for reduced physical activity levels in children with cancer in the acute treatment setting are complex. Reasons include child factors, the treatment environment, and oncology team culture. These data can be used to inform development of interventions that address physical inactivity in children with cancer.
311 Teenagers and young adults with cancer, parents and age-appropriate care:‘It didn’t only happen to me, it happened to everybody else too’
Queen's University Belfast, Belfast, United Kingdom
Background/rationale or Objectives/purpose: The wellbeing of young people with cancer is compromised by serious illness at a critical life course transition. Young people's care falls between paediatric, adult and specialist settings, leaving age-related care needs not well understood. Previous research highlights diverse preferences with no universal agreement on optimal age-appropriate care.
Methodology or Methods: This doctoral study explored the experiences of fourteen young people diagnosed in their teenage and young adult years (16–24 years), receiving treatment in adult settings. A series of three interviews were conducted over 12–18 months using participatory mapping to explore identity, illness, relationship and care narratives. Two interviews were undertaken with young people's identified caregivers (all parents), and single interviews with fifteen multidisciplinary professionals. The life-course paradigm and holistic wellbeing construct ‘Sense of Coherence’ were applied to analyse how young people might live well with illness and sustain their developmental trajectory.
Impact on practice or Results: Young people's experience of cancer is confirmed as an evolving process with common transitions and unique turning points. Dominant cancer discourses, healthcare system hierarchies and normative models of independent ‘adulthood’ and youth development are identified as constraining influences on their capacity to maintain wellbeing. Supportive relationships with parent/caregivers, family, peers and professionals are identified as vital resources with evidence of sustained and accelerated age-related development.
Discussion or Conclusions: Relationship-based care: An increased focus on relationship-building, communication and resource-orientated support for young people and their parent/caregiver(s) is recommended to help young people engage with their illness experiences as valued, if unwelcome, opportunities for wellbeing promotion across the life course.
305 Factors impacting physical activity participation in children with cancer and their siblings at Kids Cancer Care (KCC)
Carolina Chamorro Vina1,2, Juliet Spence3, Natalia Albinati2, Francesca Rossi4, Giulia Zucchetti5, Nicole S Culos-Reed2,6,7
1Kids Cancer Care Foundation of Alberta, Calgary, Canada;2University of Calgary, Faculty of Kinesiology, Calgary, Canada;3University of British Columbia, Faculty of Medicine, Vancouver, Canada;4Rehabilitation Service, Public Health and Pediatric Sciences Department, A.O.U; Città della Salute e della Scienza–Regina Margherita Children Hospital, Turin, Italy;5Pediatric Onco-hematology, Stem Cell Transplantation and Cell Therapy Division, A.O.U; Città della Salute e della Scienza–Regina Margherita Children Hospital, Turin, Italy;6University of Calgary, Department of Oncology, Cumming School of Medicine, Calgary, Canada;7Alberta Health Services, Cancer Care, Tom Baker Cancer Centre, Department of Psychosocial Resources, Calgary, Canada
Background/rationale or Objectives/purpose: Purpose: To identify physical activity (PA) barriers, facilitators and preferences among tweens and teens (11–18 years old) affected by cancer, and their siblings. Data will be used to inform quality improvement initiatives for PEER, a PA program offered by Kids Cancer Care (KCC).
Methodology or Methods: Methods. A cross sectional survey was completed by 121 participants (59 patients/survivors and 62 siblings) involved with KCC. The survey consisted of questions on demographics, barriers, facilitators, and attitudes toward PA. Descriptive statistics were used to analyze socio demographics and clinical characteristics. A comparison among the groups (patient vs siblings, BMI, diagnosis, etc.) was made using t- test analysis for ordinal variables and chi-square test for categorical variables.
Impact on practice or Results: Results: Although PEER has been running since 2013, 75% of participants were unaware of the program. Among 29 activities mentioned, 63.6% of participants included a desire to try swimming, followed by climbing and hiking. Stress/fear (39.4%) was the most important barrier to PA, followed by lack of time (29.3%) and lack of confidence (28.3%) for sports participation. The most important motivating factor was support from friends (62.1%). Contrary to adults with cancer, physician advice was relatively unimportant to this population.
Discussion or Conclusions: Conclusions: PA participation in this population is affected by a unique set of barriers and facilitators. PA programs that improve self-confidence and offer a safe environment to acquire healthy PA behaviors are needed. Further improvements to the PEER program include more effective promotion, reconsideration of PA venue selections, offering more preferred activities, and introducing friend support.
269 Emotional distress and coping strategies of adolescents’ mothers undergoing HSCT in Russia
Alina Khain, Tatyana Ryabova
Dmitry Rogachev National Medical Research Center Of Pediatric Hematology, Oncology and Immunology, Moscow, Russian Federation
Background/rationale or Objectives/purpose: Background Previous studies have shown noticeable distress of caregivers and its association with the children's adjustment to cancer treatment (Jobe-Shields L. et al, 2009; Packman W. et all, 2010). The aim of the research was to describe the maternal distress characteristics and it's associations with coping strategies prior and during the HSCT in Russian sample.
Methodology or Methods: Methods Measures of psychological symptoms (SCL-90-R), emotional distress (DT-P), and coping behavior (COPE) were obtained from 28 mothers of adolescent's’ with oncohematological diseases (aged 31–53; M = 41.1+5.65) prior to HSCT (T0:-1 week) and during the active phase of transplantation (T1:+3 week).
Impact on practice or Results: Results The results demonstrated that the distress of mothers before and during HSCT was at the level from moderate to high (T0: 6.83+2.54; T1: 6.00+2.47). At T0 the increase of distress was significantly associated with symptom dimensions: depression (r = 0.395∗), anxiety (r = 0.641∗∗), hostility (r = 0.396∗), psychoticism (r = 0.427∗), as well as the global wellness index (r = 0.482∗), at T1 the level of distress is associated only with anxiety (r = 0.464∗). Less use of coping restraint (r = 0.392∗) at the stage of preparation for HSCT and greater denial (r = 0.466∗) at the stage of active treatment were interrelated with a higher level of distress of adolescents’ mothers (∗ p < 0.05; ∗∗ p < 0.01).
Discussion or Conclusions: Conclusions The detected level of maternal distress confirms their need for additional psychological support. Further understanding of adolescents’ mothers adjustment will help to develop comprehensive psychological programs for families undergoing HSCT in Russia.
235 Prevalence and Severity of Psychological and Physical Symptoms Among Childhood Cancer Patients on Active Therapy
ashraf mohamed1, Meg Cardoni2, mohamed kabbani2, Mohamed Abdelmonem2, Elie Fegali3, Victoria Burris4
1Cook Children Medical Center, fort worth, USA;2St Francis Hospital, Tulsa, USA;3Tulsa University, Tulsa, USA;4University of Oklahoma, Tulsa, USA
Background/rationale or Objectives/purpose: To determine therapy related symptom prevalence, and degree of distress during childhood cancer therapy.
Methodology or Methods: Children age 2–18 years receiving cancer therapy were included. SSPedi (Symptom Screening in Pediatrics Tool) has 15 questions (Qs) with Likert score of 0–4 assess degree of symptom bothersome was utilized. 67 patients participated (94% of all offered), survey was filled out by patients or care givers. Follow up survey was completed for 91% during the 6 months study period. 128 surveys were analyzed, with total 1920 Qs.
Impact on practice or Results: The most frequently reported and bothersome among all patients was feeling tired 76%, with 23.3% severely bothered by it, followed by being cranky or angry 59%,and pain 53.4%.
Significantly higher psychological symptoms (feeling sad, worried, scared) were reported compared to somatic symptoms (47% Vs 32%) with severe distress (21.7% Vs 14.2%). P
Follow up showed significant changes (P
Significantly higher percentage of girls reported symptoms across all 15Qs compared to boys, yet with lesser distress intensity (P 0.01).
More than 50% of patients with Solid tumor reported problems in 7/15 Qs compared to 3/15 Qs in patients with ALL, yet,70% of patients with ALL reported being tired with 30% severely bothered by it compared to solid tumors (45.5% and 13.5%). P = 0.01.
Discussion or Conclusions: Children with cancer reported multiple symptoms with significant distress. Proactively screening and addressing therapy related symptoms is recommended to help improve patient tolerance to therapy and QoL.
218 Access to therapeutic innovation for children with advanced cancer in Northern Europe
Sierra Alef-Defoe1, Solenne Carof2, Hanne Baekgaard Larsen1, Nanna Maria Hammer1, Emilien Schultz2, Sylvain Besle2, Karsten Nysom1, Britt Pinkowski Tersbøl3
1Department of Pediatrics and Adolescent Medicine, Juliane Marie Centre, Rigshospitalet, Copenhagen, Denmark;2SINCRO Team: Gustave Roussy and Aix Marseille University, INSERM, IRD, SESSTIM, Marseille, France;3Global Health Section, Department of Public Health, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark
Background/rationale or Objectives/purpose: As personalized medicines become therapeutic solutions for children with advanced cancers, there is increasing concern about access to these targeted therapies. Typically available through Phase I/II clinical trials, these targeted therapies are only available at certain centers, often necessitating patient mobility for enrollment. As pediatric cancers are already rare, concerns about access are exacerbated by increasing specialization. Children's access to innovative cancer therapy may be hindered by systematic and socio-cultural factors. The ACCE study (Access to therapeutic innovation for Children and adolescent with Cancer across Europe) has begun investigating this issue in the French setting, but it has not been investigated in the Nordic region, where Copenhagen's Rigshospitalet is the main childhood cancer trial center.
Objective: Explore patients’, caregivers’, and providers’ experiences and challenges with referring, accessing, or providing innovative therapies for children with cancer in Northern Europe.
Methodology or Methods: Participants are recruited from the pediatric hematology/oncology Phase I/II trial unit at Rigshospitalet, Copenhagen, Denmark. In-depth, semi-structured interviews are conducted with 5–10 families and 20+ providers. Interviews address themes of care trajectory and socio-cultural dimensions of the trial experience. Observational research takes place in the trial unit. A thematic analysis will be conducted. Data collection takes place between March - August 2019.
Impact on practice or Results: The results will provide important knowledge on access to innovative medicines for children with advanced cancer in the Nordic countries and in Europe when analyzed with the French ACCE data.
Discussion or Conclusions: Findings will empower stakeholders to improve access to innovative therapy for children with cancer.
189 A qualitative study on parents of childhood cancer survivors and their return to daily family life and couple relationship
Mona L. Peikert1, Laura Inhestern1, Konstantin A. Krauth2, Gabriele Escherich3, Stefan Rutkowski3, Corinna Bergelt1
1Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany;2Department of Pediatrics, Pediatric Hematology & Oncology, Klinik Bad Oexen, Bad Oeynhausen, Germany;3Department of Pediatric Hematology and Oncology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
Background/rationale or Objectives/purpose: Childhood cancer leads to changes and burden in the lives of all family members. Only little is known about the reintegration of parents of childhood cancer survivors into daily life after the end of treatment. This study investigates cancer-related changes and the reintegration into daily family life and partner relationship during intensive cancer treatment and thereafter.
Methodology or Methods: We interviewed 49 consecutively sampled parents of 31 cancer survivors (≤ 18 years at diagnosis of leukemia or brain tumor) approximately 16–24 months after the end of intensive cancer treatment (e.g. chemotherapy). The transcripts were analyzed using qualitative content analysis.
Impact on practice or Results: During treatment, parents struggled with the difficulties of every-day life (e.g. work, household, childcare). Couples got little time with each other and some reported dispute and burden. But over the long term, being faced with the child's disease also led to strengthened relationships, improved communication, increased mutual trust and greater appreciation of daily family life. Support by the extended family, strong relationship prior to diagnosis and use of psychosocial services had a positive impact. Even though some family relationships remained strained, most families had adapted well at the time of the interview.
Discussion or Conclusions: Parents described various positive and negative changes in their family life and partner relationship. In some families, relationship and family strain remained high after the end of treatment. Specifically, some families lacked the energy required to carry on as they did before the diagnosis. Psychosocial services supporting parents with the re-entry into daily life could address specific problems of this population.
185 Cancer-related fatigue in children diagnosed with cancer
Lotta Hamari1,2, Liisa Järvelä3, Päivi Lähteenmäki3, Mikko Arola4, Olli Heinonen5, Anna Axelin1, Tero Vahlberg6, Sanna Salanterä1,7, Nicole Culos-Reed8
1Department of Nursing Science, University of Turku, Turku, Finland;2Faculty of Kinesiology, University of Calgary, Calgary, Canada;3Department of Pediatrics, Turku University Hospital, Turku, Finland;4Department of Pediatrics, Tampere University Hospital, Tampere, Finland;5Paavo Nurmi Centre & Department of Health and Physical Activity, University of Turku, Turku, Finland;6Department of Biostatistics, University of Turku, Turku, Finland;7Turku University Hospital, Turku, Finland;8Faculty of Kinesiology, University of Calgar, Calgary, Canada
Background/rationale or Objectives/purpose: Previous research on cancer-related fatigue in children is inconsistent. A total of 50–76% of children with cancer have been reported to experience fatigue. In order to support the timing of psychosocial support and physical activity promotion among children with cancer, it is important to estimate the level of fatigue at different stages of treatment.
The aim was to assess the level of self-reported fatigue in children during cancer treatment.
Methodology or Methods: This was a longitudinal observational study of 5 to 16-year-old children with cancer. Fatigue was assessed with validated questionnaires (PedsQLTM Multidimensional Fatigue Scale by Varni et al. 2002) filled by participating children at five points (0, 2, 6, 12 and 30 months from diagnosis). Higher scores (0–100 scale) indicated less fatigue. Analysis included descriptive statistics and repeated measures analysis of variance.
Impact on practice or Results: N = 21 (7 girls, 14 boys; mean age 9.3yr SD 3.5) children with cancer participated. The mean (SD) of the fatigue scores at each time point (from beginning to 30 months) were 67 (15), 68 (13), 72 (19), 74 (13) and 76 (14), respectively. The change in Fatigue scores was significant (p = 0.043). In paired comparisons, fatigue scores at 12 months and 30 months differed from baseline.
Discussion or Conclusions: The fatigue scores were worse at the beginning of the treatment, and improved at the 12 and 30-months measurement points. Interventions such as psychosocial support and physical activity promotion should be targeted early in the treatment trajectory to help to alleviate the negative impact of fatigue on well-being and overall quality of life.
184 Self-perceived physical appearance in children diagnosed with cancer
Lotta Hamari1,2, Liisa Järvelä3, Päivi Lähteenmäki3, Mikko Arola4, Olli Heinonen5, Anna Axelin1, Tero Vahlberg6, Sanna Salanterä1, Nicole Culos-Reed2
1Department of Nursing Science, University of Turku, Turku, Finland;2Faculty of Kinesiology, University of Calgary, Calgary, Canada;3Department of Pediatrics, Turku University Hospital, Turku, Finland;4Department of Pediatrics, Tampere University Hospital, Tampere, Finland;5Paavo Nurmi Centre & Department of Health and Physical Activity, University of Turku, Turku, Finland;6Department of Biostatistics, University of Turku, Turku, Finland
Background/rationale or Objectives/purpose: Childhood cancer treatments may lead to undesired changes in body appearance such as edema, weight gain, and hair loss. In order to provide psychosocial support related to these changes, it is important to know how children perceive themselves at different stages of treatment.
The aim was to assess the level of self-perceived physical appearance (SPPA) in children diagnosed with cancer during treatment.
Methodology or Methods: This was a longitudinal observational study of 10- to 16-year-old children with cancer. The SPPA was assessed at five points (0, 2, 6, 12 and 30 months from diagnosis). The SPPA is a valid measure, with higher scores (0–5 scale) reflecting a respondent perceiving his/her appearance as better (Lintunen et al., 1987). Analysis included descriptive statistics and Wilcoxon signed rank test.
Impact on practice or Results: N = 14 (3 girls, 11 boys; mean age 12.8yr) children diagnosed with cancer participated. The mean (SD) of the appearance scores at each timepoint (from beginning to 30 months) were 4.0 (0.94), 3.7 (0.95), 3.1 (1.4), 4.1 (0.94) and 3.5 (1.2). The scores between the 1st and 2nd (p = 0.046), 2nd and 4th (p = 0.025), and 3rd and 4th (p = 0.042) measurement points were statistically different.
Discussion or Conclusions: Children's perception of their appearance is impacted by treatment, with decreases shown in SPPA from diagnosis through treatment. Perceived physical appearance may be a significant contributor to overall well-being, and thus should be addressed during the treatment and recovery phases.
181 Experience of distress in age 20's patients during cancer treatment
Toho University, Tokyo, Japan
Background/rationale or Objectives/purpose: Adolescent and young adults (AYAs) are in a critical period of life marked by developmental transitions, such as completing education and getting job, becoming independent from parents, and getting married and having children. A diagnosis and treatment of cancer can be physically, and emotionally large impact to AYA patients. Young adult cancer patients had higher distress than senior adults. Especially it was highest in age 20's patients. This study's object was to describe experience of distress in those patients during cancer treatments.
Methodology or Methods: This study applied for cooperation to patient group of AYA. Conditions of participation is diagnosis with cancer between age 20–29years, and treatment to cancer which it does not matter the time from diagnosis. To the participants, conducted a semi-structured interview what they experience and how they feel during treatment of cancer. The interview data were analyzed qualitative descriptive.
Impact on practice or Results: 8 participants response this study. Distress in age 20's patients identified could be classified into seven core categories: inevitable physical distress; fear of death; inferiority to normal others; guilt for parents; anxiety for future; loneliness without peers; embarrassment to get help.
Discussion or Conclusions: Age 20's patients have many varieties distress not only physical and psychological and psychosocial but problems of developmental stage. From these results, it is suggested that it is necessary to consider the need for support on various situations for cancer patients in 20's who have many distress.
158 Developing Exercise and Physical Activity Guidelines and Recommendations in Pediatric Oncology: An Application of the Delphi Technique
Conné Lategan1, Amanda Wurz1, Carolina Chamorro-Vina1,2, Nicole Culos-Reed1,3,4
1Faculty of Kinesiology, University of Calgary, Calgary, Canada;2PEER Program, Kids Cancer Care of Alberta, Calgary, Canada;3Department of Oncology, Cumming School of Medicine, Calgary, Canada;4Department of Psychosocial Resources, Tom Baker Cancer Centre, Alberta Health Services, Calgary, Canada
Background/rationale or Objectives/purpose: To develop exercise guidelines and recommendations in pediatric oncology using the Delphi technique.
Methodology or Methods: Nine leaders (ie, core team) in pediatric oncology and exercise were invited to oversee the multi-stage, iterative process of reaching consensus on the topic. Next, 113 experts (eg, researchers, clinicians) were identified and invited to sit on the international committee. Subsequently, the core team developed and distributed the first survey consisting of closed- and open-ended questions. Items were developed to determine level of agreement on key terminology (eg, exercise vs. PA), exercise prescription (ie, frequency, intensity, time, type), and current literature (eg, behaviour change). Responses are being collected and analyzed using qualitative analysis and descriptive statistics. Consensus is defined at 80% agreement.
Impact on practice or Results: To date,109 of 122 responses (89% response rate) have been collected and preliminary analyses indicate consensus on topics covering terminology and current literature. However, there is disagreement concerning exercise prescription, specifically, with regards to distinguishing between high, moderate, and low intensities.
Discussion or Conclusions: Findings represent a first step towards reaching consensus and developing evidence-based exercise guidelines/recommendations. This multi-stage, iterative process (ie, survey development, dissemination, data collection) will continue until September 2019, when the core team and an advisory committee comprised of key stakeholders (eg, clinicians, patients/survivors, caregivers) will convene to discuss areas of agreement/disagreement and seek to unanimously outline the consensus document. The outputs from this project have the potential to guide further research and move exercise evidence into pediatric oncology practice at a local, national, and international level.
139 The Pediatric Psychosocial Matrix and Guidelines: A Tool to Assess Readiness and Guide Implementation
Lori Wiener1, Lynne Padgett2, Julia Rowland3, Wendy Pelletier4, Victoria Sardi-Brown5, Peter Brown5, Mary Jo Kupst6
1NCI/NIH, Bethesda, USA;2Veterans Affairs Hospital, District of Columbia, USA;3Smith Center for the Healing Arts, District of Columbia, USA;4Alberta Children's Hospital, Calgary, Canada;5Mattie Miracle Cancer Foundation, District of Columbia, USA;6Medical College of Wisconsin, Milwaukee, USA
Background/rationale or Objectives/purpose: Background/rationale: In 2015, in collaboration with the Mattie Miracle Cancer Foundation (MMCF), the Psychosocial Standards of Care Project for Childhood Cancer (PSCPCC)—a large interdisciplinary group of expert stakeholders, published 15 evidence-based standards for pediatric psychosocial care. The Standards have provided centers a blueprint for providing evidence-based care.
Methodology or Methods: Methodology
Since the standards were published, centers have requested guidance on best practices for their implementation. In response, a Matrix (Institutional Scoring Measure) for each standard has been developed. Accompanying the matrix, individual Guidelines (how to) implement each of the standards has also been developed. The Guidelines include strategies (action steps) and resources/tools to help sites improve their score on the matrix and enhance their current practice.
Impact on practice or Results: Impact on practice
Psychosocial providers at over 20 centers are currently reviewing the Matrix and Guidelines using an online rating tool. Centers are rating the usefulness and clarity of each standard within the Matrix, and the flexibility allowed for scoring how their program can implement each standard within the Guidelines. They are also reviewing whether strategies and tools provided for each standard can help centers to improve their score and care.
Discussion or Conclusions: Discussion
Following the current review, the Matrix and Guidelines will be revised and will then undergo evaluation at additional pediatric oncology centers. Funding through MMCF will be provided for centers to evaluate the feasibility, usefulness, and outcomes associated with the use of the newly developed Matrix and Guidelines.
123 When seeing the Psychologist is Normal! Routine Psychological Engagement for Adolescents and Young Adults
Chris O’Brien Lifehouse, Sydney, Australia
Background/rationale or Objectives/purpose: The challenges faced by Adolescents and Young Adults (AYA's) with cancer have been well documented particularly when treated in adult facilities. Chris O‘Brien Lifehouse is a large tertiary oncology hospital in Sydney Australia that treats large numbers of AYA patients, particularly those with sarcomas.
Methodology or Methods: The AYA service within the hospital comprising of Medical Oncology, Nursing, Allied Health and Palliative care have developed direct referral pathways in which patients are provided with opt out psychology services. As a result almost all patients engage in routine psychological care from their diagnosis through to survivorship or palliation.
Impact on practice or Results: Over the past eight years routine psychological care has been provided to all patients under the age of 30 within the hospital. Very few have declined this input, and anecdotally this engagement with patients and families has normalised the impact of cancer on emotional functioning, allowed a proactive approach to clinical issues (such as anticipatory nausea and vomiting) and allowed for strong relationship building to foster difficult conversations when needed such as when making decisions about treatment or at end of life.
Discussion or Conclusions: The process of making psychological treatment part of routine care has allowed young people to speak freely to both their oncologists but also other members of the team around their emotional distress, worries or anxieties. By normalising this experience young people are more likely to identify when they are having difficulties and be engaged around strategies to help manage same.
116 Developing, implementing and evaluating in-hospital physical activity practices in pediatric oncology programs in Alberta: an integrated knowledge translation project
Amanda Wurz1, Gregory M.T. Guilcher1,2, Fiona Schulte1,2, Carolina Chamorro-Viña1,3, S. Nicole Culos-Reed1,4
1University of Calgary, Calgary, Canada;2Alberta Children's Hospital, Calgary, Canada;3Kids Cancer Care Foundation of Alberta, Calgary, Canada;4Tom Baker Cancer Centre, Calgary, Canada
Background/rationale or Objectives/purpose: To develop, implement, and evaluate in-hospital physical activity (PA) practices in pediatric oncology programs in Alberta.
Methodology or Methods: Three inter-related studies will be conducted. Study 1 [cross-sectional mixed-methods] will provide insight into usual care and barriers/enablers to implementing in-hospital PA practices (e.g., recommendations, education). Healthcare professionals (e.g., oncologists, nurses, physiotherapists, child life specialists), administrators, and patients (5–18 years, newly diagnosed) and their caregivers at the two children's hospitals in Alberta will be sent a survey. A subsample will be invited for interviews to further explore barriers/enablers identified. Study 2 [cross-sectional qualitative methods] will identify strategies to address the barriers/enablers identified in Study 1. Experts who have successfully implemented in-hospital PA practices and the subsample identified in Study 1 will be invited for interviews. Study 3 [longitudinal cohort mixed-methods] will test in-hospital PA practices and implementation tools (e.g., training/education materials) developed using research, theory, findings from Study 1 and Study 2, and advisory board input. The impact of in-hospital PA practices on patients’ health-related outcomes and PA behaviour and the fidelity and acceptability of the in-hospital PA practices and implementation tools will be evaluated.
Impact on practice or Results: Project underway.
Discussion or Conclusions: This project will address a service gap in pediatric oncology, add evidence for the feasibility of in-hospital PA practices, and may promote PA behaviour and health-related outcomes for children in pediatric oncology programs in Alberta. The outputs from this project have the potential to extend and improve service delivery and health-related quality of life for children undergoing treatment for cancer across Canada.
115 Identifying and describing sustainable physical activity programs for children diagnosed with cancer: results from an international environmental scan
Amanda Wurz1, Julia Daeggelmann2, Natalia Albinati1, Liam Kronlund1, Carolina Chamorro-Viña1,3, S. Nicole Culos-Reed1,4
1University of Calgary, Calgary, Canada;2German Sport University Cologne, Cologne, Germany;3Kids Cancer Care Foundation of Alberta, Calgary, Canada;4Tom Baker Cancer Centre, Calgary, Canada
Background/rationale or Objectives/purpose: To identify and describe sustainable physical activity programs for children diagnosed with cancer.
Methodology or Methods: Five data sources were used to identify established and ongoing programs offering physical activity to children diagnosed with cancer. Upon confirming eligibility, correspondents were sent a series of open-ended questions via email. Responses were analyzed using qualitative content analysis and were summarized descriptively and narratively.
Impact on practice or Results: Forty-six programs, in 10 countries, were identified and qualitative data was obtained for 36 programs, in 8 countries. Internationally, most programs are taking place in Europe, and are offering physical activity to children with mixed cancer types, at different stages of the cancer-trajectory, across a range of settings (e.g., community, hospital). The majority allow children to bring a support person (e.g., sibling, friend) and require medical clearance prior to participation. All programs are professionally supervised; however, there is considerable variability with regards to other program characteristics (e.g., funding structure, physical activity intensity and frequency).
Discussion or Conclusions: Results provide a first look at where and in what capacity physical activity programs are being offered to children diagnosed with cancer and provide guidance for those seeking to develop/implement physical activity programs themselves. Moreover, findings underscore the necessity of establishing international networks, conducting multi-site projects, and engaging in public relations to ensure high-quality research is being conducted and translated. Moving forward, concerted efforts are required to ensure all children diagnosed with cancer have access to physical activity programs as a means of enhancing their health and quality of life.
101 Ethical Challenges When Adolescent Cancer Patients Refuse Treatments Based on Cultural/Religious Reasons
BC Children's Hospital, Vancouver, Canada; University of British Columbia, Vancouver, Canada
Background/rationale or Objectives/purpose: In pediatric oncology there can be complex ethical challenges when adolescent oncology patients refuse cancer treatment plans based on cultural/religious grounds; and when patients and parents seem to lack capacity for significant decision making. The presentation offers a process and an ethics framework for making for assessments and interventions.
Methodology or Methods: The method is to utilize a standard ethics decision making framework instrument. Key concepts such as patient competency/capacity, parental authority and best interest standards, “the harm principle” are explicated providing guidance outlining care options.
Impact on practice or Results: The intervention is a process contingent upon current national, provincial legislation and policies of health authorities as well as national healthcare codes of ethics. Our type of case details patients diagnosed with a very treatable form of brain cancer and yet there is resistance to the requisite steps to move forward with life-saving treatment. Utilizing the ethics framework will impact practice by creating a multi-faceted strategy for dealing with this type of complex case and will focus on key ethical questions: does the patient have capacity to make the decision to pursue or refuse treatment and is she/he unduly influenced?
Discussion or Conclusions: What are the team's obligations since the patient is still a minor under government legislation? What happens if pediatric oncologists decide to call the Ministry of Child Protection to force a patient into treatment? In conclusion, strategies/approaches (cultural brokers, spiritual care) are offered to further positive outcomes for patient care and to further relational ethics.
98 Music Meet-Up: A novel group therapy intervention for adolescents and young adults with cancer (AYA)
Chana Korenblum1,2,3, SarahRose Black1,4
1Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada;2Division of Adolescent Medicine, Department of Paediatrics, The Hospital for Sick Children, Toronto, Canada;3Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, Canada;4Faculty of Music, University of Toronto, Toronto, Canada
Background/rationale or Objectives/purpose: Objectives/Purpose: AYA face marked psychosocial challenges, including increased isolation from peers, disruptions to identity formation, and emotional distress. Few evidence-based interventions exist addressing AYA's unique needs. This study aims to determine feasibility and preliminary effectiveness of a novel, developmentally-informed group therapy using music as a coping tool.
Methodology or Methods: Methods: A 6-week music therapy group was held at Princess Margaret Cancer Centre in Toronto, Canada for patients aged ≤39 (any stage and cancer type). Feasibility data was collected, including referral information, attendance, and resources required. Participants completed pencil and paper measures prior to the start and upon completion of the group. Quantitative scales assessed social isolation, depression, anxiety and distress. Qualitative surveys evaluated the patient experience.
Impact on practice or Results: Results: Of 16 referrals received, 12 participated in the group, and 10 in the study. At least 10 attended all six sessions. Resources included space, instruments, office supplies, and co-facilitators’ time. Mean age was 35.5 (range 24–42) and 7/10 identified as female. Cancer diagnoses included lymphoma, breast, testicular, colon, CNS, and endometrial. Quantitative data will be aggregated with future iterations of the group to achieve adequate statistical power. Qualitative data was analyzed using summative content analysis, and through coded categories revealed themes of connectedness, enjoyment, accessibility, and self-expression.
Discussion or Conclusions: Conclusion and Clinical Applications: Positive initial impressions from participants, coupled with feasible methods of delivery, make this pilot a promising, innovative intervention addressing gaps in AYA psychosocial care. Further research directions include quantitative and more in-depth qualitative evaluation, as well as expansion to other sites.
65 Perceptions of Participating in Family-Centered Fertility Research among Adolescent and Young Adult Males Newly Diagnosed with Cancer: A Qualitative Study
Leena Nahata1,2,3, Taylor Morgan1, Keagan Lipak1, Olivia Clark1, Nicholas Yeager2,3, Sarah O’Brien4,3, Stacy Whiteside2, Anthony Audino2,3, Gwendolyn Quinn5, Cynthia Gerhardt1,3
1Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, USA;2Nationwide Children's Hospital, Columbus, USA;3The Ohio State University College of Medicine, Columbus, USA;4Center for Innovation and Pediatric Practice, The Research Institute at Nationwide Children's Hospital, Columbus, USA;5New York University School of Medicine, New York, USA
Background/rationale or Objectives/purpose: Over half of male childhood cancer survivors experience infertility after treatment, which impairs future quality of life. Sperm banking rates remain low, and little is known about how adolescent and young adult (AYA) males and their families make fertility preservation (FP) decisions. To date, prospective fertility research at cancer diagnosis has been limited due to concerns about burdening families. This qualitative study examined patients’/parents’ perceptions of participating in a pilot study testing a new FP decision tool among AYA males newly diagnosed with cancer.
Methodology or Methods: Forty-four participants (19 mothers, 11 fathers, 14 male AYAs 12–25 years old) from 22 families completed brief assessments at diagnosis (before beginning treatment), including an FP decision tool, and subsequently participated in a qualitative interview exploring the impact of study participation. Verbatim transcripts were coded using the constant comparison method using selective coding.
Impact on practice or Results: 89% of mothers, 63% of fathers, and 71% of AYAs reported positive effects of participation. 11% of mothers, 36% of fathers, and 29% AYAs were neutrally affected by participating; none reported a negative effect. The three main subthemes among those who reported positive effects were: participation promoted deeper thinking; participation influenced conversations; altruism. Inter-rater reliability was excellent (kappa coefficient = 0.96).
Discussion or Conclusions: This study demonstrates it is feasible and beneficial to implement family-centered FP research/decision tools among AYA males newly diagnosed with cancer. AYAs and their parents noted participating in the study helped them think about and discuss FP. Facilitating FP decisions before treatment may mitigate future regret and optimize psychosocial and reproductive outcomes.
56 Long term hospital stay and psychiatric problems - A case report
Alakananda Gudi1, Jeremy Heng2, Gwen li Sin1
1Singapore General Hospital, Singapore, Singapore;2Singapore General Hospital, Singapore, Singapore
Background/rationale or Objectives/purpose: There is a high prevalence of psychiatric problems in long term inpatients in general hospital. It is complicated by the medical co- morbidity which warrants a long term stay. Psychiatric diagnoses can present and change depending on the severity of medical co- morbidity. It is imperative for clinicians to monitor patients for psychiatric problems in the long term
Methodology or Methods: Regular history taking from the patient, corroborative history from family and collaboration with the nurses and other specialists treating the patient becomes essential
Impact on practice or Results: Open mindedness and readiness to diagnose and treat psychiatric problems along with close collaboration and support not only for patient, but for treating team has a better prognosis for the patient
Discussion or Conclusions: Readiness and willingness to diagnose and treat psychiatric issues Collaboration with and support to the treating team
46 Long-term effects of chemotherapy on gut microbiota, and metabolic, immune, psychological and cognitive parameters in young adult cancer survivors: A Progress Report
Julie M. Deleemans1, Fatima Chleilat2, Raylene A. Reimer1, Linda Carlson1
1University of Calgary Cumming School of Medicine, Calgary, Canada;2University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: The gut microbiome is an important modulator for immune, metabolic, psychological and cognitive function. Chemotherapy adversely affects the gut microbiome, and alters physiological and psychological function. Cancer among young adults has risen 38% in recent decades. Understanding chemotherapy's long-term effects on gut microbiota and psycho-physiological function is critical to minimize survivors’ risk for chronic health problems, but remains unexamined.
Methodology or Methods: This longitudinal study investigates chemotherapy induced long-term gut dysbiosis, and associations between gut microbiota, and immune, metabolic, cognitive and psychological parameters using data collected at < 1 month (T1), 3 months (T2), and 6 months (T3) post-chemotherapy. Participants will be 18–39 year old blood or solid tumor cancer survivors (N = 50), and a healthy sibling or individual cohabiting with the patient as a control (N = 50). Gut microbiota composition will be measured from fecal samples. Psychological and cognitive measures will include depression, anxiety, PTSD, pain, and social and cognitive function. Dual-energy X-ray Absorptiometry (DXA) will measure fat and lean mass. Pro-inflammatory cytokines will be assayed from blood serum, and long-term cortisol will be assayed from hair samples.
Impact on practice or Results: Regression and linear mixed model analyses will investigate associations within time points (T1 – T3), between groups, and covariates with gut microbiota, cognitive, psychological, and physiological parameters.
Discussion or Conclusions: Knowing what bacterial species are depleted after chemotherapy is crucial as future studies could aim to help survivors by co-administering specific health promoting bacteria (i.e. probiotics), possibly preventing or reversing the psycho-behavioral, immune and metabolic deficits often seen following chemotherapy, ultimately leading to reduced symptom burden and improved quality of life.
C. Cancer care in older adults
734 The meaning of Hope: Hope and distress among older patients with cancer
Gil Goldzweig1, Yakir Rottenberg2, Jeremy Jacobs3, Lea Baider4
1The Academic College of tel-Aviv Yaffo, Tel Aviv Yaffo, Israel;2Sharett Oncology Institute, Hadassah University Hospital, Jerusalem, Israel;3; Department of Geriatrics and Geriatric Rehabilitation, Hadassah University Hospital, Jerusalem, Israel;4; Assuta Medical Center, Oncology Institute, Tel-Aviv, Israel
Background/rationale or Objectives/purpose: As a result of the aging of the world population and the development of more effective medical treatments for cancer, the population of older cancer survivors is expected to grow rapidly. Not much is known about hope as resource and the nature of hope and its relation to distress among older cancer patients.
Methodology or Methods: This study surveyed 242 patients ≥65 years old.,Measures included: Depression measure (Geriatric Depression Scale); Distress (Distress Thermometer); Standard Hope measure (Adult Hope Scale) and; Specific questions about the nature and content of hopes of the patients. Levels of hope were compared by means of ANOVA between age groups.
Impact on practice or Results: Distress and depression were positively correlated and hope was negatively correlated to the age of the patients. Hopes to stay alive and to be less tired were the hopes with the highest negative relations to age. Among the age group of oldest old (>=86 years old) the highest levels of hope were not to be in pain and to die without pain while at the younger age group (age 65 to 85) the highest levels of hope was of the hope be with the family when reaching death.
Discussion or Conclusions: The wishes, values, and attitudes of older patients may be different from those of younger patients and may be in conflict with ethical and medical considerations. Health care teams should understand and address the unique needs of each individual and to discuss and respect the views of older patients in order to achieve mutual understanding and agreed-upon treatment plan.
729 Who will support the care givers? The role of older patients with cancer as supporting their own spousal caregivers
Gil Goldzweig1, Lidia Schapira2, Lea Baider3, Jeremy Jacobs4, Elisabeth. Andritsch5, Yakir Rottenberg6
1The Academic College of Tel Aviv Yaffo, Tel Aviv Yaffo, Israel;2Stanford University School of Medicine, Palo Alto, USA;3Assuta Medical Center, Oncology Institute, Tel-Aviv, Israel;4Department of Geriatrics and Geriatric Rehabilitation, Hadassah University Hospital, Jerusalem, Israel;5Division of Clinical Oncology, The medical University of Graz, Graz, Austria;6; Sharett Oncology Institute, Hadassah University Hospital, Jerusalem, Israel
Background/rationale or Objectives/purpose: Purpose: With the aging of the population, more and more older cancer patients will be taken care of at home by spousal caregivers. It is accepted that in general spousal caregivers are supporting the patients often at the expense of their own physical and emotional health. Nevertheless, little is known about the quality of life specifically among spousal caregivers of older cancer patients. The aim of the current study is to explore the variables related to emotional toll of spousal caregivers for cancer patients aged 65 – 85 year
Methodology or Methods: This study surveyed 242 spousal caregivers of patients ≥65 years old, diagnosed with cancer, treated with curative or palliative intent, and within 6 months of treatment at enrollment. Measures included: Depression measure (Geriatric Depression Scale); Distress (Distress Thermometer) and; Social support (The Cancer Perceived Agents of Social Support). Logistic regression analyses were used in order to identify predictor of clinical depression and distress.
Impact on practice or Results: Among the caregivers the frequency of clinical depression and distress was 16.5% and 28% respectively. Higher levels of spousal support (support from the patients) and of friends were associated with lower levels of depression and distress. Interestingly, increasing patient age was also associated with reduced levels of caregiver depression.
Discussion or Conclusions: Clinicians can utilize the fact that caregiver's perceived spousal support may have a positive effect on caregivers’ levels of depression. Older patients may be encouraged to support their own caregivers. thus, empowering both older patients and their spousal caregivers to confront the challenges of cancer treatment into advanced age.
657 Comparison of Two Administration Methods for Measuring Functional Fitness in Older Cancer Survivors
Alexis Whitehorn, Catherine Sabiston, Daniel Santa Mina, Linda Trinh
University of Toronto, Toronto, Canada
Background/rationale or Objectives/purpose: Few older cancer survivors (65+ years) are meeting physical activity (PA) guidelines of 150 minutes/week of moderate-to-vigorous PA. Barriers include fatigue, time constraints, age, poor baseline health status, comorbidities, functional limitations, and cognitive decline. Limited access to supervised exercise testing may hinder participation in exercise programming. Therefore, home-based programs may be a viable approach to increasing PA in this population. For accurate exercise prescriptions, physical functioning may be evaluated using the senior fitness test (SFT), however, no study has evaluated the accuracy of self-administration of the SFT compared to supervised, in-person administration. The purpose of this study is to compare the accuracy of self-administered SFT at home versus supervised administration by an exercise physiologist.
Methodology or Methods: This study is a within-subjects design with 29 older cancer survivors over the age of 65. Participants will perform the SFT on two separate occasions: (1) self-administered and unsupervised in home environments; and (2) supervised and administered by an exercise physiologist. This SFT will include a 30-second chair stand and 30-second arm curl to measure strength, as well as 6-minute walk test and 2-minute step test to measure aerobic endurance.
Impact on practice or Results: In progress.
Discussion or Conclusions: The SFT administered at home is anticipated to be an efficient, accurate, and feasible method to test physical functioning without supervision in cancer survivors. Completing a self-administered home-based SFT will potentially reduce the need for supervised testing, enabling accurate PA prescriptions for home-based programs leading to greater participation and dissemination of exercise programming in older cancer survivors.
317 Challenges in Psychiatric Oncology: Clinical Gray Areas and Dilemmas Cancer-Related Cognitive Impairment
Virginia O’Brien1, Jennifer Knight2, Sheila Lahijani3
1Duke University Medical Center, Durham, USA;2Medical College of Wisconsin, Madison, USA;3Stanford University, Stanford, USA
Background/rationale or Objectives/purpose: Cancer-related cognitive impairment (CRCI) can occur during any phase of cancer and its treatment and can significantly affect patients’ quality of life. In a subset of up to 30% of patients, CRCI becomes persistent. Furthermore, the etiology of CRCI remains unclear, posing a challenge to the identification and use of appropriate interventions. Given the effects of persistent CRCI on patients’ role functioning, its treatment is paramount to comprehensive cancer care.
Methodology or Methods: Few evidence-based options for treatment of CRCI exist. Physicians often turn to psychostimulants to help mitigate symptoms of cognitive dysfunction. However, many physicians are wary of these medications, citing concern about abuse or dependence. Others worry that combining psychostimulants with benzodiazepines and opioids - medications commonly used during cancer treatment - is poor medical practice, as these agents have opposing effects. The fact that evidence for psychostimulants in treatment of CRCI is mixed lends additional controversy to their use.
Impact on practice or Results: This lecture will focus on the tension between evidence, practice, safety, and quality of life in the decision to prescribe psychostimulants to cancer patients. It will provide participants with tools to determine the best care options for their patients. The newest concepts surrounding the etiology and identification of CRCI will also be discussed.
Discussion or Conclusions: Treating CRCI can lead to pharmacologic challenges for physicians. While avoidance of psychostimulants may seem the intellectually prudent choice, in this patient population that avoidance must be reconsidered. Future research should focus on patient risk factors and preventive treatments for CRCI.
186 Development of a nursing practice scale for cancer pain relief for older adults with cognitive impairment-Self evaluation by nurses
Nami Sakuraba1,2, Yu Koyama1
1Toho University, Tokyo, Japan;2Health Sciences University of Hokkaido, Hokkaido, Japan
Background/rationale or Objectives/purpose: This study was aimed to develop a scale to measure the sense of difficulty in nursing practice for cancer pain relief for older adults with cognitive impairment.
Methodology or Methods: The scale was drafted from study and was modified by Cancer nursing specialists. This scale consists of one question of confidence in nursing practice and difficulties in nursing practice for cancer pain relief, a total of 48 questions in six groups. Date are expressed as mean and calculated Cronbach's alpha.
Impact on practice or Results: The total of 68 participants comprised 2 men and 66 women which the valid response rate 100%. Their mean age was 35.4 years old. Number of years cancer nursing experience mean 8.8 years, dementia nursing experience 10.0years. Nurses were divided into three groups based on their confidence in nursing practice for relieving cancer pain. 67.6% in Low confidence group, 30.9% in Medium group, and 1.5% in High group. Cronbach's alpha for six groups were 0.903 for “assessment”,0.805 for “grab”, 0.86 for ”direct care “,0.658 for ”predict”, 0.697 for “judge with others”, and 0.721 of “realize”.
Discussion or Conclusions: The surface validity and the content validity were recognized about the nursing practice scale for cancer pain relief for elderly cancer patients with cognitive decline in self-evaluation of nurses. The construct validity was supported to a certain extent from this survey. From now on, it is necessary to increase the number of investigation subjects and perform confirmatory factor analysis.
This research was supported by JSPS Grant-in-Aid for Young Scientists(B) JP26870519 and JP17K17447.
D. Cancer access, inequity and diversity
752 Breast Cancer Screening in Women with Schizophrenia: A Systematic Review and Meta-Analysis
Alison Hwong1, Kara Wang2, Stephen Bent3, Christina Mangurian1
1Department of Psychiatry; University of California, San Francisco, San Francisco, CA, USA;2School of Medicine; University of California, San Francisco, San Francisco, CA, USA;3Department of Medicine; University of California, San Francisco, San Francisco, CA, USA
Background/rationale or Objectives/purpose: Women with schizophrenia appear to be diagnosed with later stage breast cancer than women without mental illness. We aimed to review and quantify the differences in rates of screening mammography for women with schizophrenia and other psychotic disorders compared to the general female population.
Methodology or Methods: A systematic literature search was conducted in PubMed, Embase, Web of Science and PsycInfo databases from inception to September 14, 2018. The search strategy included search terms for breast cancer, mammography, schizophrenia and psychosis. Studies were eligible for inclusion if they reported on the primary outcome of screening mammography rate for women with schizophrenia and other psychotic disorders compared to rates in the general population.Two reviewers independently screened and evaluated eligible studies. Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines were used for abstracting data. The main outcome measure was rate of screening mammography for women with schizophrenia and psychotic disorders versus rate in comparable female population without these diagnoses. A random effects model meta-analysis was performed.
Impact on practice or Results: From 304 abstracts reviewed, 11 studies met the inclusion criteria, representing 25,447 women with diagnoses of schizophrenia or psychosis across 4 countries. The meta-analysis yielded a pooled OR of 0.51 (95% CI 0.42–0.60, P
Discussion or Conclusions: Women with schizophrenia and other psychotic disorders are about half as likely to receive screening mammography as the general female population. Interventions are needed to promote equity in breast cancer screening for this population.
678 Breast Cancer Screening among recently immigrated Canadian women: Are Socio-Cultural factors becoming barriers to employing this preventative measure? Results from a qualitative study
Rabeb Khlifi1,2, Janusz Kaczorowski2, Magali Girard2, Djamal Berbiche3
1Université de Montréal, Montreal (QC), Canada;2 Centre de recherche du CHUM, Montreal (QC), Canada;3Charles-Le Moyne Hospital Research Center, Longueuil (QC), Canada
Background/rationale or Objectives/purpose: The use of mammography screening remains low among immigrant women who lived in Canada for less than 10 years compared to the Canadian-born women and to immigrant women who lived in Canada for more than 10 years (42% vs.70%). This qualitative study was based on personal interviews and was designed to identify the barriers and challenges of the use of mammography screening among recent immigrant women aged 50 to 69 from Northwest Africa (Tunisia, Algeria, and Morocco) currently residing in Montreal.
Methodology or Methods: Drawing upon the Health Belief Model, twelve individual interviews were conducted in Arabic or French (according to women's preference). Each semistructured interview lasted between 60 and 90 minutes. Interview data were translated into English and analyzed using the QDA Miner software.
Impact on practice or Results: Maghrebi immigrant women in Montreal had similar barriers to breast cancer screening than what has been found in the literature: lack of knowledge, erroneous beliefs about breast cancer and screening (taboo, fatalism, karma, fear, etc.),lack of trust in health care, etc. All results were grouped in 4 major themes: “Knowledge”, “Attitudes”, “Social support”, and “Practices and experiences with breast cancer screening”.
Discussion or Conclusions: Our study showed that the most important barrier to accessing mammography services was suboptimal recognition and accommodation of the unique ethno-cultural needs of Maghrebi immigrant women by the healthcare system. These difficulties were further amplified by poor access to family doctors and healthcare system as well as the women's economic circumstances.
Keywords: breast cancer screening, mammography, recent immigrant women, North African women, Maghrebi women
668 LivingOutLoud.Life and vivreAfond.ca – Shattering the Silence for Young Adults and Teens Living with Advanced Cancer
Shelly Cory1, Jill Taylor-Brown1, Denis Raymond2
1Canadian Virtual Hospice, Winnipeg, Canada;2Canadian Virtual Hospice, Ottawa, Canada
Background/rationale or Objectives/purpose: The Canadian Partnership Against Cancer report Adolescents & Young Adults with Cancer, 2017 states “adolescents and young adults (AYAs) with cancer face distinct challenges for which specialized and tailored system responses are needed.” The needs of AYAs with advanced illness are not well understood, their concerns are not being addressed, there are few programs available and their voices are largely silent - until the launch of www.LivingOutLoud.Life and www.vivreAfond.ca (LOL/VAF).
Methodology or Methods: With funding from CPAC, The Canadian Virtual Hospice convened AYAs living with advanced illness to identify gaps in information and support and to envision a solution. The AYAs identified six thematic areas (relationships, self, daily life, sex and fertility and decisions), developed multimedia content and engaged clinical experts to create the world's only webspace grounded in their lived experience with advanced illness and that is evidence-informed.
Impact on practice or Results: Several barriers impede AYAs from sharing issues with healthcare providers. This silence impacts holistic, quality care. LOL/VAF helps healthcare providers to better understand and respond to the realities of being young and living with an advanced illness.
Discussion or Conclusions: LOL/VAF underscores the power of personal narratives in communicating health information, empowering diverse populations living with illness and assisting healthcare providers in understanding unique health needs. Attendees will become familiar with the depth and breadth of the often unmet needs of AYAs and better understand these issues to deliver the patient care that can make a difference.
659 The Power of Shared Voices: Lessons learned from engaging immigrants, refugees and Indigenous people in knowledge tool development
Shelly Cory1, Shane Sinclair2,1, Glen Horst1
1Canadian Virtual Hospice, Winnipeg, Canada;2University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: Healthcare services are often out of sync with cultural, spiritual and religious perspectives on health, death, and grieving. This dissonance affects attitudes and behaviours in seeking and utilizing health services and can lead to poor communication, misunderstanding, and anxiety as patients, families and healthcare providers interact.
Methodology or Methods: To address a gap in cultural-specific information the Canadian Virtual Hospice (CVH), in collaboration with 40 pan-Canadian partners launched LivingMyCulture.ca (LMC). LMC includes 650 videos clips of members of 11 cultures sharing stories about the intersection of culture, spirituality, and religion with their experiences of healthcare, life-limiting illness, and grief. It is an educative tool for healthcare providers to improve their competency in providing culturally responsive care and an educational resource and source of support for patients and families.
Impact on practice or Results: CVH engaged 58 Canadians from diverse cultural backgrounds and locations to identify needs, envision solutions, and contribute to online knowledge tools. However, engaging patients and families from underserved populations in tool development comes with significant challenges. Navigating these challenges and sharing the stories and perspectives of diverse patients and families have led to the development of successful tools, five national awards and new investments that will enable CVH to further this work.
Discussion or Conclusions: This workshop will introduce LMC and share strategies and lessons learned from engaging and collaborating with diverse, underserved populations to build knowledge tools. Challenges and successes encountered in engaging the lay public will be discussed to help develop a better understanding of what successful engagement looks like.
488 Advancing Equity in Cancer Care for Serious Mental Illness: Research, Clinical Care, and Coalition Building
Kelly Irwin1,2, Amy Corveleyn1
1Massachusetts General Hosptial, Boston, USA;2Harvard Medical School, Boston, USA
Background/rationale or Objectives/purpose: Individuals with serious mental illness (SMI) experience inequities in cancer care and research which contribute to increased cancer mortality. To improve cancer outcomes for people with SMI, we need to develop, evaluate, and disseminate innovative approaches to clinical care, research, and advocacy that foster academic and community partnerships.
Methodology or Methods: Informed by qualitative research and collaborative care principles, we developed and successfully piloted the BRIDGE intervention for SMI and cancer. BRIDGE is population-based (we systematically identify SMI at cancer diagnosis), person-centered (we meet people where they are, assess hopes and fears, and address barriers to care), and team-based. BRIDGE includes proactive psychiatry consultation, case management, and collaboration with oncology to integrate cancer and mental health treatment. Additionally, we developed a verbal consent process and conducted visits across settings to support enrollment and trial completion. We are now investigating the impact of BRIDGE on cancer care in a randomized trial.
Impact on practice or Results: We expanded our team to include a cancer navigator with training in SMI to build capacity to conduct home visits and partner with community mental health. In collaboration with diverse stakeholders we established the Cancer and Mental Health Collaborative, a 600 member coalition dedicated to decreasing disparities in cancer care.
Discussion or Conclusions: As psycho-oncology clinicians and researchers, we can advocate for proactive psychiatry consultation for patients with SMI and think creatively about how we can engage vulnerable populations and design inclusive trials. Collaborating with a stakeholder coalition can inform the research agenda, increase reach to underserved communities, and improve cancer outcomes.
452 Cancer Patient Autonomy & Decision-Making in Early-Phase Trial Recruitment
Jonathan Avery1, Khotira Baryolay1, Lynda G. Balneaves2, Rinat Nissim1, Lillian Siu1, Pamela Degendorfer1, Amit Oza1, Gary Rodin1, Jennifer A.H. Bell1
1University Health Network, Toronto, Canada;2University of Manitoba, Winnipeg, Canada
Background/rationale or Objectives/purpose: Early-phase cancer clinical trials (CTs) require special attention to informed consent procedures in order to ensure participants’ understanding of the risks and benefits, and evolving safety and efficacy data. This qualitative study explores the factors that influence patients’ decisions about participating in early-phase CTs through an ethics lens.
Methodology or Methods: Using an interpretive descriptive design, semi-structured interviews were conducted with 18 adult patients with advanced cancer who had been approached to participant in a phase 1 CT. Additionally, 3 family members and 6 CT personnel were interviewed to illuminate the social dynamic and relational factors influencing patient decision-making. Interviews were transcribed verbatim and analyzed using Sherwin's theory of relational autonomy and constant comparative analysis.
Impact on practice or Results: Results demonstrate an emerging core category of ‘You don’t have a choice’, which was informed by a life versus death narrative, illuminating the desperation participants felt when standard of care was no longer an option. Supporting this core category were two themes that illustrate the personal and relational factors that influenced patients’ decisions about taking part in early-phase CTs: 1) Being provided with hope; 2) Not ready to die.
Discussion or Conclusions: Findings highlight the paradoxical nature of achieving informed consent in a circumstance described by patients as life versus death. Intertwined in the decision-making process was interpersonal dynamics that contributed to feelings of hope and desperation. These factors will inform the development of a tool to assist patients in making an informed decision about CT participation that reflects their beliefs and values.
451 Use of Patient Centered Language and Critical Word Selection in Describing Persons With Cancer and/or Their Care
Marisa Quiery, Donna Murphy, Michelle Riba, Julie Brabbs, Irene Turkewycz, Nicole Fawcett
Rogel Cancer Center at Michigan Medicine, Ann Arbor, USA
Background/rationale or Objectives/purpose: Media, medical professionals, and society often use militaristic language and metaphor describing those with cancer as fighters, survivors, and warriors. Not all, of those people are comfortable with evocative descriptors. Militaristic language as a homogeneous voice in cancer care poses potential threats to the psychosocial well-being through use of polarizing language. Competence around critical word selection in cancer essential assessment tool for all. The implementation of training around language selection creates the opportunity for individualizing how patients view and understand their diagnosis for clinicians. Language, imagery, and metaphor offer a means to describe,view and internalize a diagnosis. Professionals equipped with skills to cater their words to the needs of patients and empower them to discuss health in effective ways is critical. The use of marketing materials, panels, resource tools, and conversation are methods employed to shift the cultural language in cancer care and begin to use a patient-centered approach.
Methodology or Methods: A constructed mixed methods approach: Data collection, checklist, literature review and needs assessment from a patient centered audience.
Impact on practice or Results: This inquiry explores language that persons with cancer prefer, in reference to their cancer. We suggest language opportunities/threats when talking, writing, and describing cancer for others. We discuss how polarizing words, may be interpreted/perceived that potentially impact information sharing about cancer, to others.
Discussion or Conclusions: Shift the culture of language to fit needs
Polarizing language impact on person's current/future health
Avoid references that are not congruent with patients’ perspective
345 Occupational rehabilitation of male breast cancer patients: motifs, experiences and implications
Kati Hiltrop1,2, Paula Heidkamp1,2, Sarah Halbach1,2, Evamarie Midding1,2, Christoph Kowalski3, Nicole Ernstmann1,2
1Center for Health Communication and Health Service Research (CHSR), Department of Psychosomatic Medicine and Psychotherapy, University Hospital Bonn, Germany, Bonn, Germany;2Center for Integrated Oncology Bonn (CIO), Germany, Bonn, Germany;3German Cancer Society, Berlin, Germany, Berlin, Germany
Background/rationale or Objectives/purpose: As work can give meaning and identity, provide financial security and allow social participation, the return to work (RTW) represents an important part of the rehabilitation process of survivors. Until now, RTW processes among male breast cancer patients (MBCPs) are not fully understood. Therefore, the analysis aims to investigate motifs, experiences and outcomes regarding RTW from the MBCPs’ perspective.
Methodology or Methods: Data from the mixed-methods N-MALE study (Male breast cancer: Patients’ needs in prevention, diagnosis, treatment, rehabilitation, and follow-up care), conducted 2016–2018 in Germany, were used for a secondary analysis. The present explorative qualitative content analysis considered the data collected by semi-structured interviews with MBCPs (n = 27). A key word search enabled to identify n = 14 interviews with work-related content.
Impact on practice or Results: Eight motifs for RTW were found: desire for normalcy; distraction; need for activity; social contacts; work as a source of pleasure; financial reasons; not perceiving oneself as sick; having a work with low physical effort.
MBCPs mainly reported positive experiences with their workplace from diagnosis until RTW. However, also stigmatization occurred.
The aftermath of the disease and its treatment lead MBCPs to experience versatile changes in their productivity i.e. due to fatigue, forgetfulness or emotional burden.
Discussion or Conclusions: New insights on motifs and experiences in the context of occupational rehabilitation specific for MBCPs were generated. The results on implications indicate special support needs in the aftermath of the return, when long-term effects of the disease and treatment limit productivity.
Note: Results may be presented partially on a German health care research conference in October 2019.
325 A cross-sectional study of cancer stigma and the cause of cancer in a sample of Japanese adults
Emi Takeuchi1,2,3, Rina Miyawaki4, Daisuke Fujisawa5, Hiroko Yako-Suketomo6, Koichiro Oka7, Miyako Takahashi2
1Department of Neuropsychiatry, Keio University Graduate School of Medicine, Tokyo, Japan;2Center for Cancer Control and Information Services, National Cancer Center, Tokyo, Japan;3Research Fellow of Japan Society for the Promotion of Science, Tokyo, Japan;4School of Arts and Letters, Meiji University, Tokyo, Japan;5Department of Neuropsychiatry, Keio University School of Medicine, Tokyo, Japan;6Faculty of Sports and Health Sciences, Japan Women's College of Physical Education, Tokyo, Japan;7Faculty of Sport Sciences, Waseda University, Tokyo, Japan
Background/rationale or Objectives/purpose: Reducing the stigma of cancer is an international and domestic goal. Stigma is subject to social context, but little is known of what the general population thinks of cancer amongst Japanese society. Therefore; this study aimed to explore Japanese attitudes toward cancer by comparing cancer stigma with other countries and identifying what they think causes cancer.
Methodology or Methods: We conducted an online survey targeting the general population aged 20–65. We used the Japanese version of the Cancer Stigma Scale to evaluate cancer stigma. Also, we asked participants to put the following items in order of what they think causes cancer most; lifestyle, chance, aging, environmental factors, and genetic inheritance. Cancer stigma was compared with Marlow's study participants in the UK by t-test; while causes of cancer were assessed using the Friedman test.
Impact on practice or Results: A total of 450 responses were included in the data analysis. The analysis demonstrated that the cancer stigma was significantly higher in Japan than in the UK. There were significant differences in the ratings of answers in the questionnaire of the causes of cancer. The causes of cancer are ranked in the following order; lifestyle, genetic inheritance, environmental factors, aging and chance (Mean rank: 2.16, 2.45, 3.25, 3.30 and 3.84 respectively). Wilcoxon signed-rank tests reflected significant differences in pair comparisons except for the comparison between environmental factors and aging.
Discussion or Conclusions: Although the number of cancer patients has increased in Japan; this study confirmed that cancer is stigmatized and considered to be caused by lifestyle rather than by chance.
280 Dying at the Margins: Justice and Healing through Mindful Presence
Anne Arundel Medical Center, Annapolis, USA
Background/rationale or Objectives/purpose: The purpose of this presentation is to give a voice to an often forgotten population: the urban homeless neat the end of life. It will craft a portrait of what it is like to live and die at the margins and explore:
Indignities that are unique to disadvantaged populations
Anger, suspicion, and mistrust that characterize relations with the health system
Resilience and creative adaptability that allow folks to “get along”
Methodology or Methods: This presentation will use the the genre of narrative medicine. (Results presented in Dying at the Margins: Oxford University Press, 2019) It will draw on oral and photographic narratives to tell the story of a person living homeless with small -cell lung cancer and how solidarity with his palliative care team transformed his end-of-life journey from one that was grim into an experience that was filled with dignity, meaning, and support.
Impact on practice or Results: The presentation will argue that in order to optimally serve patients and families who live at the outskirts, skills in cultural competence and cultural humility must be developed.
Discussion or Conclusions: Ultimately this work is about advancing a much needed call to action for healthcare providers in caring for marginalized populations. It conveys that in order to best serve the needs of disadvantaged populations we must understand the trauma that results of being bereft of social connections, economic resources, and political empowerment and develop practices in caring that account for the circumstances that disempower both patients and their loved ones.
234 Testing an Evidence-based Stress Management Intervention for Rural Spanish-speaking Latina Breast Cancer Survivors
Anna Napoles1, Jasmine Santoyo-Olsson2, Anita Stewart2, Steven Gregorich2, Liliana Chacon2, Carmen Ortiz3
1National Institute on Minority Health and Health Disparities, Bethesda, USA;2University of California San Francisco, San Francisco, USA;3Circulo de Vida Cancer Support and Resource Center, San Francisco, USA
Background/rationale or Objectives/purpose: Adapt and test in community settings a peer-delivered stress management intervention among rural Spanish-speaking Latina breast cancer survivors (LBCS).
Methodology or Methods: Based on formative research with community partners, we adapted a cognitive-behavioral stress management intervention to address the needs of rural Spanish-speaking LBCS throughout survivorship. We recruited rural Spanish-speaking Latinas with non-metastatic breast cancer. Using a randomized controlled trial design, women were randomized to receive the program immediately or wait 6 months (control group). Trained peers delivered the 10-week intervention that taught cognitive reframing and behavioral skills for managing stress. Using intention-to-treat analyses, repeated-measures linear regression models estimated changes in slope between groups, controlling for site. Primary outcomes were breast cancer-specific quality of life and distress assessed at baseline, 3-months, and 6-months; secondary outcomes were self-assessed skills targeted by the intervention.
Impact on practice or Results: Of 153 participants, 76 were randomized to the intervention and 77 to the control group; 92% were retained at 6-months. Mean age was 54.8 years (SD = 10.5), 69% had less than high school education, more than half had only Medicaid or no insurance, and 48% reported financial hardship in the past year. We observed greater reductions in anxiety (ß = -0.336; P < .05) and greater improvements in ability to relax at will (ß = 0.659; P < .001) in the intervention vs control group.
Discussion or Conclusions: Trained peers can successfully deliver psychosocial health programs in community settings, and these interventions can reduce anxiety and improve the ability to relax at will among rural Latina breast cancer survivors. Recruitment of vulnerable Latina cancer survivors for psycho-oncological research is feasible.
190 A Global Perspective: Embracing Views about Cancer of Older Latino Immigrants
Iraida Carrion LCSW1, Tania Estapé2, Manilee Neelamegam1, Jane Roberts3, Jorge Estapé2
1University of South Florida, Tampa, USA;2FEFOC, Fundacion Contra El Cáncer, Barcelona, Spain;3University of South Florida Manatee-Sarasota, Sarasota, USA
Background/rationale or Objectives/purpose: Older Latino immigrants experience social inequalities and barriers due to their limited English language proficiency and access to health care in the USA. However, their perspective is highly valued within their family system. Despite this, little is known about Latinos 60 years+ and the transmission of knowledge, beliefs, and attitudes about cancer to family members and friends. Understanding their perspectives regarding cancer is essential given their role within the global context.
Methodology or Methods: The qualitative study explored the knowledge, beliefs, attitudes, and advice older Latino men and women provide to family members and friends about cancer. The data represents individuals residing in the Greater Tampa-Bay area (n = 200). Recruitment occurred in community-based settings and interviews were conducted in Spanish and transcribed into English. Qualitative data were analyzed using a constant comparison method and coded in ATLAS.ti.
Impact on practice or Results: Many themes emerged in the study. The participants believe a cancer diagnosis is beyond the individual's control and that it is in God's hands. They recommend that family and friends be careful in the decision-making process of choosing a doctor, as it is crucial for the doctor to provide proper treatment options. Lastly, their advice to others is to remain positive in the face of a cancer diagnosis.
Discussion or Conclusions: The role of older immigrant Latinos in the transmission of knowledge about cancer is noteworthy. They manifest meaning-based beliefs and coping strategies that can assist friends and family in dealing with their cancer diagnoses, treatment options, and access to care in psychosocial oncology.
166 Examining Cancer Prevention and Diagnosis Beliefs among Older Latinos in the Central Florida
Manlinee Carrion1, Tania Estapé2, Man Neelamegam3, Jane Roberts4,5, Jorge Estapé6
1University of South Florida, Barcelona, USA;2FEFOC, Fundacion Contra El Cáncer, Bar, Spain;3University of South Florida, Tampa, USA;4University of South Florida-Sarasota-Manatee, Sarasota, USA;5Duvall Family Studies, Sarasota, USA;6FEFOC, Fundacion Contra El Cáncer, Barcelona, Spain
Background/rationale or Objectives/purpose: Due to poor data and an ageing Latino population, it is important to examine older Latinos’ beliefs regarding cancer prevention and diagnosis to ensure effective care.
Methodology or Methods: A survey was developed and administered in Spanish to a convenience sample of older Latinos to explore their beliefs about cancer prevention and diagnosis. Univariate analysis showed population characteristics, and frequencies showed responses to questions on cancer prevention and diagnosis. The effect of age, educational-level, US length of stay, and marital status on cancer-related beliefs was assessed using logistic regression.
Impact on practice or Results: Participants’ mean age was 67.9 (N = 168; 65.5% female), while 56.5% were married or cohabiting, and 35.5% had a tertiary education. Most were from South America (46.7%), and mean of US length of stay was 25.8 years. Most (50.3%) said that cancer could be prevented, 62.7% said it could be diagnosed early, 61.1% said prevention and diagnosis were different, and 98.1% said that tobacco caused cancer. However, 10.1% said that tobacco use only affected the smoker. Education predicted knowledge of cancer prevention and diagnosis. Participants with elementary and high school educations were more likely than those with a college degree to say that prevention and diagnosis were the same (β= 1.69 and β= 1.49, respectively; p < 0.01). Those with elementary educations were less likely to agree that secondhand smoke causes cancer (β= − 1.87, p < 0.01).
Discussion or Conclusions: Older Latinos’ beliefs about cancer prevention and diagnosis vary depending on their educational level. Educational information about cancer prevention and diagnosis should incorporate these findings.
27 Project: Patient Stories - A Tool to Support Engagement of Pacific Cancer Patients with Mainstream Medicine
Karin Jansen, Laura Thompson
Cancer Support: Psychology and Social Work, Counties Manukau Health, Auckland, New Zealand
Background/rationale or Objectives/purpose: At Counties Manukau Health (CMH), Pacific people are significantly less likely to engage in Cancer treatment than non-Pacific people. Barriers to engagement include difficulties in understanding and conflicting beliefs. Using a narrative approach, an online patient stories video tool was developed that aimed to address barriers to Pacific people engaging in treatment. The influence and power of stories to connect experiences and convey genuineness is well researched.
Methodology or Methods: A needs assessment confirmed the complex health needs of the Pacific Community. The indigenous Fonofale model, Narrative approach, New Zealand Health Strategy and CMH processes and policies, provided the foundation to the project plan of developing an online tool of patient stories. The video tool was accessible to the CMH workforce to support Pacific Cancer patients and their families. A project plan was used to outline the relevant tasks in developing and introducing the tool to the workforce for implementation and evaluation.
Impact on practice or Results: While evaluative data is still being collected, preliminary use has shown that patient stories have the capacity to increase engagement of this population and offer an effective way to connect medicine and the Pacific community. There were a number of learnings during the development and implementation of the tool which may provide insight into future work.
Discussion or Conclusions: Based on findings, patient stories appear to be a viable and powerful way to connect with populations less engaged in Cancer treatment. Patient stories can be used by other services to support equitable access to Pacific patients, and engage other vulnerable population groups with mainstream treatment.
15 What is the out-of-pocket cost burden of cancer care? A literature review
Beverley Essue, Natalie Fitzgerald, Nadine Dunk, Nicolas Iragorri, Claire de Oliveira
Canadian Partnership Against Cancer, Toronto, Canada
Background/rationale or Objectives/purpose: Growing costs of cancer treatment pose a substantial economic burden on healthcare systems, patients and their families.There is disparate evidence on the out-of-pocket cost burden and this limits opportunities to mobilize efforts within the cancer control system to improve the supports available for patients. We aimed to review the literature on out-of-pocket costs associated with cancer in Canada, compare with estimates from other OECD countries, and better understand the methods used to measure the economic burden of cancer.
Methodology or Methods: A comprehensive literature review of studies published in the academic and grey literature from 2008 to 2018, searching the main electronic databases. This was supplemented with key-informant interviews. Results were analyzed using a narrative synthesis and quality appraisals were conducted.
Impact on practice or Results: We included 78 studies and conducted ten key-informant interviews. Breast cancer was most commonly studied. The average monthly out-of-pocket expenditure reported in Canadian studies was CDN$380, with prescription medicines and transport representing the highest cost categories followed by aides and equipment. Most studies used patient surveys. Few studies measured costs using longitudinal data or measured out-of-pocket costs in proportion to income; yet these were identified by key informants as crucial for understanding the affordability and impact of out-of-pocket costs. Fewer studies investigated how patients coped with financial hardship or the long-term impact on household-level economics.
Discussion or Conclusions: We found evidence that cancer patients in Canada face high out-of-pocket costs. Our results support the need for national PharmaCare and, potentially, a re-definition of how essential care is classified under the Canada Health Act.
14 How should we measure the psychosocial costs of cancer? A literature review
Beverley Essue1, Fitzgerald Natalie1, Nadine Dunk1, Nicolas Iragorri1, Claire de Oliveira1,2
1Canadian Partnership Against Cancer, Toronto, Canada;2Centre for Mental Health and Addiction, Toronto, Canada
Background/rationale or Objectives/purpose: Psychosocial costs are the intangible costs of the psychological and emotional burden associated with illnesses, such as cancer. It results from psychological distress and turmoil, pain and suffering and other negative experiences that are commonly associated with cancer. Few studies have quantified the psychosocial costs of cancer to patients. This study aimed to describe and critically analyze approaches used for measuring the psychosocial costs of cancer.
Methodology or Methods: A comprehensive literature review of primary studies and reviews published in the academic and grey literature from 2008 to 2018 in ten electronic databases. This was supplemented with key-informant interviews. Results were analyzed using a narrative synthesis and quality appraisals conducted.
Impact on practice or Results: Forty-four primary studies and 13 reviews were included. Most reviews (85%) were published within the last five years and included studies of various cancer sites (69%). Various dimensions of the psychosocial burden were described, including: health-related quality of life; clinical diagnoses, or social, emotional, financial, and relational wellbeing and functioning. Few studies provided a cost estimate. Informants identified a) heterogeneity in the experience and impact of cancer and; b) the lack of standardized tools as key challenges for costing the psychosocial burden of cancer.
Discussion or Conclusions: More methodological work is needed to better estimate the psychosocial burden of cancer. Consultation with experts, patients and families, will help estimate and validate the costs associated this burden. The development and validation of a tool to measure this burden will ensure consistency in measurement.
E. Cancer care in low resource settings
743 Reflections of emotions among health care professionals in delivering end of life care in Tamil Nadu
Veenavani Nallepalli1, Saranya Sunadarraju2, Krishna kumar Rathnam3, Karthikeyan Perumal4, Vigneshvaran K3
1Sri Balaji college of physiotherapy,BIHER, Chennai, India;2Annamalai University, Chidambaram, India;3Madurai Meenakshi hospital and research center, Madurai, India;4Kamakshi Memorial hospital, Chennai, India
Background/rationale or Objectives/purpose: On managing a life limiting illness like cancer it is not only the patients and their care takers who are distressed. It is also a team work of doctors, nurses and allied health professionals who meet the physical, psychological, social and spiritual and cultural needs of the patients and their family to provide best ever possible care at the end of life of cancer patients.
The aim of the present study is to bring out the true emotional reflections like challenges, contentment, stress, loss, exhaustion that has a negative effect on their individual well being. The need to conduct the study in Tamil Nadu is because concept like this have received much attension in high income countries little is known about addressing these issues in low & middle income countries. Hence this study intend to focus on emotional challenges and will suggest possible intervention to cope up with the situations.
Methodology or Methods: A Qualitative research method is adopted to examine the real experience in depth by using a special set of methods like indepth interviews and content analysis and the list of emergent themes were reported.
A study involves study participants 30 cancer physician & surgeons 20 nurses and 10 psychologist and social workers working in cancer centers of Tamil Nadu. The samples were choose through convenience sampling technique.
Impact on practice or Results: Our finding of the study obtained through in depth interview can be summarized as follows. Distress due to sudden death, dying and suffering. Failure in treatment, mismatch in communication, difficulties failed in breaking bad news, attributed emotional challenges, burden, work over bad non availability of medical treatment and equipments. Patients inability in delayed decision making due to financial constraints, loss of hope, managing relationship with patients
Discussion or Conclusions: Distress due to sudden death, dying and suffering. Failure in treatment, mismatch in communication, difficulties failed in breaking bad news, attributed emotional challenges, burden, work over bad non availability of medical treatment and equipments. Patients inability in delayed decision making due to financial constraints, loss of hope, managing relationship with patients.
Keywords: Distress, Burden, Healthcare professionals, Specialist.
616 Personality, hardiness, psychological wellbeing and caregiving satisfaction among cancer caregivers in Sub Saharan Africa: a systematic review
RACHEL KANSIIME1, ALISON KINENGERE2, GODFREY RUKUNDO1, Gideon Albertus Jacobus VanDyk3, Jackson Orem4
1MBARARA UNIVERSITY OF SCIENCE & TECHNOLOGY, MBARARA, Uganda;2MAKERERE UNIVERSITY, KAMPALA, Uganda;3Stellenbosch University, CapeTown, South Africa;4Uganda Cancer Institute, KAMPALA, Uganda
Background/rationale or Objectives/purpose: The purpose of this review, was to organize, in a meaningful way, available research on the role of personality and hardiness on the psychological wellbeing and caregiving satisfaction of cancer caregivers.
Methodology or Methods: A search strategy was developed by an information specialist and four databases (PubMed, PsychINFO, EMBASE and Google Scholar) were identified and searched for relevant literature. 256 studies were retrieved. Studies that were published between 2000 and 2019 were included in the review. Seventeen studies that met our inclusion criteria after screening, were coded and data extracted using a data extraction form developed in Excel spread sheet 2007. Publication bias was assessed using a funnel plot. Selection bias was addressed by reporting (using the PRISMA flow chart), the criteria used in selection of studies. Furthermore, the overall quality of the review was assessed following the GRADE criteria.
Impact on practice or Results: Preliminary findings revealed that cancer caregivers experience stressful situations, which is a potential threat to their psychological and emotional wellbeing. A high prevalence of depression, anxiety and objective burden in cancer caregivers was found. These findings are compatible with those of previous studies of caregivers of cancer patients.
Discussion or Conclusions: Diagnosis of cancer in a relative or someone close may be a source of immense stress. In response to the plight of their patients, cancer caregivers are at risk of becoming emotionally overwhelmed by heightened fear of death and death-related thoughts. Hence, the need for further research on personality and hardiness, on the psychological wellbeing and caregiving satisfaction of cancer caregivers in Sub Saharan Africa.
466 Patient's Perception of Cancer Care and Mental Adjustment in Low Resource Settings
Vithya V1, Vignashwaran R1, Saranya Sundararju2, Veena Vani3
1Central University of Tamil nadu, Thiruvarur, India;2Annamalai University, Chidambaram, India;3BIHER, CHENNAI, India
Background/rationale or Objectives/purpose: The Indian Scenario in cancer care was found to have great disparity in the health care facilities, accessibility, availability, and affordability prominently between the urban and rural population. Considering this, the present study is an attempt to identify the patient's perception of cancer care and mental adjustment of the cancer patients in rural settings. The sample for the study were chosen from rural parts of Tamil Nadu and there was found to be a paucity of study in India conducted among these people. The sample comprised of illiterate, and people hailing from low socioeconomic status. The study aimed to identify the unique problems, psycho-social issues and mental adjustment of each patient in obtaining treatment for cancer.
Methodology or Methods: The present study is a mixed method research. The sample included 55 cancer patients who are in the curative stage and are under treatment for the same. A semi-structured interview schedule, Kuppuswamy SES scale and Mental Adjustment inventory was the measures used.
Impact on practice or Results: The results revealed that majority of the patients were ignorant about the disease and the treatments provided. Also, most of them had to travel a far distance to avail the treatment and were obtaining the treatment using the government health scheme and are not in a position to afford to avail the treatment.
Discussion or Conclusions: The study emphasizes the need for understanding the social aspects and cultural beliefs of the disease for providing better cancer care. Further, cancer control plans should include psycho-social and financial support for the patients in low resource settings.
97 Neuro Cognitive deficit as a marker of Depression: relevance for its exploration in breast cancer patients
Devi Nandakumar1,2, Ravindran O S3
1Tata Medical Center, Kolkata, India;2Open Educational Resources for Cancer, Chennai, India;3Sri Ramachandra Institute of higher education & Research, Chennai, India
Background/rationale or Objectives/purpose: Neurocognitive dysfunction (NCD) is a cardinal feature of patients with depression. Published studies from India on NCD among breast cancer patients have so far not included assessment of NCD. Western literature has revealed significant incidence of NCD in Breast cancer patients.
Most recent studies have shown that irrespective of chemobrain, breast cancer patients may encounter subtle cognitive dysfunction mediated by cancer related Post Traumatic Stress disorder. Tools to accurately assess NCD thus becomes mandatory to delineate depression and its causes in breast cancer patients.
The purpose of this study was to assess the neurocognitive dysfunctions in patients with depression.
Methodology or Methods: We studied NCD among 20 patients diagnosed with Clinical depression who attended the Psychiatry department outpatient unit and compared with 20 normal controls.
The battery of tests employed includes 8 neuropsychological tests, which measures 6 neuropsychological domains namely executive functions, memory, attention, word knowledge, motor performance and psychomotor performance.
The incidence of NCD using Digit span, Word Knowledge, Digit symbol (WAIS), Porteuz Maze Test, Trial makingtest (Part A & B), Logical memory 1, Visual reproduction 1(WMS R) showed statistically significant higher incidence of NCD in depression (p value = 0.05).
Impact on practice or Results: Such studies may enable distinction between PTSD and chemobrain and the reversibility of NCD in properly conducted trials.
Discussion or Conclusions: The role of NCD among Breast cancer patients undergoing chemotherapy may help to sort out the PTSD from chemobrain and the reversibility of NCD.
Further studies are needed in Asian countries like India where the incidence of breast cancer is rapidly on rise.
86 Spouses of women with breast cancer: Dyadic adjustment, social support and quality of life
Claudia Pineda1, Carmen Lizette Gálvez1, Rozzana Sánchez2, Cynthia Mayté Villarreal1
1Instituto Nacional de Cancerología, Ciudad de México, Mexico;2National Autonomous University of México, Ciudad de México, Mexico
Background/rationale or Objectives/purpose: To evaluate the relationship among the perception of dyadic adjustment, social support and quality of life (QoL) of women with breast cancer (BC) and QoL of their spouses, according to the age of the dyads.
Methodology or Methods: 160 participants were enrolled: 80 women with BC and their spouses. The sample was divided by young dyads <=40 years, and old dyads >=50 years old. A cross-correlational study was conducted. The dyadic adjustment, social support of the couple, and QoL were evaluated in both members of the couple. Data analysis was made by non-parametric statistics.
Impact on practice or Results: When the older patients perceived high marital satisfaction and affection, their spouses increased physical and social activities (r=0.336; p = 0.034; r = 0.312; p = 0.050, respectively). We found a negative correlation between the husband's physical pain and physical health and the patient's social and familiar relationships and daily activities (r = 0.467, p = 0.002; r = 0.409, p = 0.009, respectively). In the younger dyads, the higher was the support and caress perceived by the patients, the lower was the pain felt by the spouses and higher their emotional health (r = 0.315; p = 0.048; r = 0.311; p = 0.050, respectively). Physical health problems and pain diminished in the spouses, while sexual problems and pain diminished in the patients (r = 0.391, p = 0.013; r = 0.341, p = 0.031, respectively).
Discussion or Conclusions: The study confirms that there is a relationship between the components of the couple (social support and dyadic adjustment) with the QoL of spouses. It shows that patients with BC could improve QoL if psychological interventions are administered dyadic and individually, especially when spouses.
77 Differences in cognitive emotional regulation by sociodemographic factors in Mexican women with breast cancer
Liliana Rivera Fong1,2, Carmen Lizette Gálvez Hernández2
1Autonomous National University of Mexico, Mexico City, Mexico;2National Cancer Institute, Mexico, Mexico City, Mexico
Background/rationale or Objectives/purpose: To compare cognitive emotional regulation strategies (CERS) in patients with breast cancer (BC) by sociodemographic variables.
Methodology or Methods: Comparative, cross-sectional study, which enrolled patients in different phases of BC treatment: diagnosis (5.5%), active treatment (56.5%), follow-up after treatment (30.4%), palliative care (3.3%), and recurrence (4.3%). The Cognitive Emotional Regulation Questionnaire (CERQ) Mexican version was administered to 398 patients with BC. This instrument measures four adaptative and two desadaptive strategies. The patients’ median age was 52; 39.7% were married, and 88.4% catholic.
Impact on practice or Results: Positive refocusing (mean = 81.16%) was the most used CERS, and the least used style was self-blame (mean = 42.29%). Patients in extremes of the level of education's distribution (p. e., illiterate, elementary school or post-grade) showed significantly higher levels of self-blame, in contrast to patients who were in the middle, such as secondary school, high school, and bachelor degree (Kruskal-Wallis = 13.62, p = 0.02). Catholic patients and patients without religion reported higher level of acceptation in comparison to Christian and Jehovah's witness patients (Kruskal-Wallis = 18.55, p < 0.01). Comparing by mean age (<52 and >53 years old), younger women had higher level of rumination (x = 57.46 vs x = 51.56; t = 2.73; p < 0.01) than older patients. There were no differences among patients by marital status, residence area or home income.
Discussion or Conclusions: CERS in Mexican patients with BC could be different depending on level of education, religion and age. Clinical implications: Clinicians and researchers should design and implement interventions programs based on the relation between socio-demographic factors and cognitive emotional regulation and its impact on emotional health outcomes.
45 Effect of Psycho social training workshop on oncology clinicians psychosocial care delivery self efficacy and perceived barrier in Nigeria
Chioma Asuzu1, Elizabeth Akin-Odanye2
1University of Ibadan, Ibadan, Nigeria;2University College Hospital, Ibadan, Nigeria
Background/rationale or Objectives/purpose: Psycho-social care is an important part of a multidisciplinary approach to cancer management to mitigate the experience of distress reported among those affected by cancer. Few specialists are available in Nigeria to assess psychosocial distress in cancer patients.
To build capacity in the psychosocial care of cancer patients through training oncology staff across government hospitals in Nigeria.
To assess the effect of training on the psychosocial care delivery self-efficacy and perceived barrier among oncology clinicians in Nigeria
Methodology or Methods: A total of 33 oncology clinicians from 17 institutions across 13 states in Nigeria participated in the 3 days psychosocial oncology training workshop following a process of call to participate sent to different hospitals in Nigeria and screening of eligible candidates. Participants completed both pre and post workshop tests on self-efficacy and perceived barrier in psychosocial service delivery to oncology patients.
Impact on practice or Results: A significant improvement was observed in their psychosocial care delivery self-efficacy ((t = -6.318; p < 0.05) and significant reduction was observed in their perceived barrier (t = 3.280; p < 0.05) to providing psychosocial care to cancer patients at the end of the workshop. At three months follow up, the significant improvement in self-efficacy was maintained (t = -5.327; p < 0.05) while the significant reduction in perceived barriers (t = .584; p>0.05) was lost.
Discussion or Conclusions: It was concluded that psychosocial training workshop was effective in improving the psychosocial care delivery self-efficacy and reducing perceived barrier among oncology clinicians in Nigeria. However it is recommended that such training should be ongoing to ensure the maintenance of its effect.
F. Complementary therapies and integrative oncology
766 Reintegration Following Non-CNS Cancer – Can we Apply Methods from Clinical Neuropsychology?
Limor Sharoni1, Ayala Bloch2
1The National Institute for the Rehabilitation of the Brain Injured, Tel Aviv, Israel.2Department of Psychology, Ariel University, Tel Aviv, Israel
Background/rationale or Objectives/purpose: The literature on cancer-related cognitive impairment (CRCI) suggests that community-based neuropsychological rehabilitation tools can be useful in reintegrating survivors of non-CNS cancer. The Sulam (“Ladder”) Program was developed to offer non-CNS cancer survivors neuropsychological treatment with a vocational focus. The innovative program integrates different content areas, including treatment of cognitive deficits, vocational rehabilitation for individuals experiencing cognitive and emotional changes, and holistic psychosocial intervention.
Methodology or Methods: The program is grounded in intervention for acquired brain injury and adapted to address the specific needs of cancer survivors in three primary domains: cognitive, emotional, and vocational. It supports participants in returning to work, in accordance with their post-cancer abilities. In six months, it includes a wide range of interventions, among them: individual and group psychotherapy, CRCI-adapted groups, yoga, sexuality and nutrition groups, job/academic consultation and placement.
Impact on practice or Results: Results of our pilot group showed that all participants, who had lost jobs prior to beginning the program, initially had minor but significant deficits in attention, executive functions, and memory, and experienced changes in functioning, mood, and behavior. Upon program completion, there were improvements in these measures, alongside high rates of reintegration into employment or academic programs.
Discussion or Conclusions: Beyond vocational success, preliminary results show that most participants experienced improvements in emotional and cognitive functioning, supporting the need for and potential benefit of post-cancer neuropsychological rehabilitation day programs with a vocational focus. Adherence rates and initial observational data are encouraging and suggest value in the group setting that goes beyond individual therapy.
725 Neuroimmunoendocrine trajectories and the response to sleep, stress, and fatigue in breast cancer survivors submitted to a Swedish massage intervention: preliminary results
Emiliana Bomfim1, Anne Leis1, Franco Vizeacoumar1, Robert Skomro1, John Gjevre1, June Lim1, Sunil Yadav2,Kalyani Premkumar1
1University of Saskatchewan, Saskatoon, Canada;2Saskatoon Cancer Center, Saskatoon, Canada
Background/rationale or Objectives/purpose: The objective of this study was to investigate the effects of a Swedish massage protocol on quality of life (QoL), sleep, stress, fatigue, and biomarkers in a population of breast cancer survivors.
Methodology or Methods: Fifteen participants underwent 1 hour/week of a novel Swedish massage protocol for 8 weeks. Data was collected in three main phases: (i) baseline (ii) during an 8-week intervention period and (iii) endpoint. Symptoms were assessed through validated questionnaires. Sleep was measured with a wrist-worn device. Saliva was collected to quantify biomarkers levels. Some physiological parameters such as blood pressure, SpO2 level, and pulse were measured. (IRB approval protocol #16-112).
Impact on practice or Results: Mean age of participants was 55 years old. There was a significant difference between baseline fatigue (M = 23.5, SD = 9.6) to endpoint (M = 34.5, SD = 9.1). Significant improvement (t(5) = 3.369, p = 0.020) was also observed in stress from baseline (M = 24.1, SD = 5.7) to endpoint (M = 20.3, SD = 8.1). There was a statistically significant improvement in blood pressure from 107.4 ± 8.5 mmHg to 99.8 ± 3.5 mmHg (p = 0.047); an improvement of 3.50 ± 1.16 mmHg. Sleep efficiency pre and post-intervention also showed improvement.
Discussion or Conclusions: Partial results of our 8-week Swedish massage program showed significant benefits for improvement of TRS.
721 How does complementary and alternative medicine can improve and prevent fatigue, sleep and psychological stress in breast cancer survivors?
Emiliana Bomfim1, Anne Leis1, Franco Vizeacoumar1, Robert Skomro1, June Lim1, John Gjevre1, Sunil Yadav2,Kalyani Premkumar1
1University of Saskatchewan, Saskatoon, Canada;2Saskatoon Cancer Center, Saskatoon, Canada
Background/rationale or Objectives/purpose: Although Complementary and Alternative Medicine (CAM) has been shown to provide positive results in managing long-term treatment-related effects (TRE), the studies conducted so far present a considerable number of gaps.
Methodology or Methods: This is a short-communication based on comprehensive evidence found in the literature.
Impact on practice or Results: Although there are some clear limitations regarding the body of research reviewed in this study, CAM is a promising group of adjuvant treatments that may assist breast cancer survivors in managing TRE. Some of these limitations and future directions are (1) Specificity: additional research is needed to unveil which type of CAM is most effective for which specific purpose so that tailored recommendations can be made to target specific interests of the patients; (2) Dosage, frequency, and efficiency: scientific evidence is needed to uncover and support CAM efficacy and efficiency. In other words, studies should increase the understanding of to whom and in what context each CAM work, when these practices should be used and for how long, and (3) Biological effects: although some studies already started to investigate the biological effects of CAM in breast cancer survivors, this still remains a largely unanswered question.
Discussion or Conclusions: The current limitations in the literature hamper the evidence-based decision-making process by health professionals and patients. On the other hand, it opens a wide possibility for scientific exploration by the scientific community.
719 Effect of clown doctors on psychological stress and fatigue levels in pediatric cancer inpatients undergoing chemotherapy
Luis Carlos Lopes-Júnior1, Emiliana Bomfim2, Denise Sayuri Calheiros da Silveira3, Gabriela Pereira-da-Silva4, Regina Aparecida Garcia de Lima4
1Nursing Department, Federal University of Espírito Santo, Vitória, Brazil;2University of Saskatchewan, Saskatoon, Canada;3University of São Paulo at Ribeirão Preto Medical School, Ribeirão Preto, Brazil;4University of São Paulo at Ribeirão Preto Nursing School, Ribeirão Preto, Brazil
Background/rationale or Objectives/purpose: Clown doctors have been shown to enhance emotional and behavioral processes but few studies have comprehensively examined the effectiveness of this practice using biomarkers. The objective of this study was to assess the effect of clown doctors on psychological stress and fatigue levels in pediatric cancer inpatients undergoing chemotherapy.
Methodology or Methods: Sixteen patients who met all criteria from a pediatric cancer inpatient unit in a Brazilian hospital participated in this quasi-experimental study. Saliva samples were collected throughout four timepoints (+1 h, +4 h, +9 h, and +13 h post-awakening) pre and post-intervention. Salivary cortisol and α-amylase levels were determined using high sensitivity enzyme-linked immunosorbent assay kits. Stress and fatigue were measured by the Child Stress Scale-ESI™ and the PedsQL™ Multidimensional Fatigue Scale respectively. Correlation between stress, fatigue and biomarker levels were investigated using non-parametric statistics.
Impact on practice or Results: Psychological stress and fatigue levels improved after the clown intervention at the collection time point +4 h (p = 0.003 and p = 0.04, respectively). Salivary cortisol showed a significant decrease following clown intervention at the collection time points +1 h, +9 h, and +13 h (p
Discussion or Conclusions: These findings provide preliminary evidence that clown intervention merits further study as a way to reduce stress and fatigue in pediatric cancer inpatients, and that self-report and biomarker measures are feasible to collect in this patient group.
707 Pilot Randomized Controlled Trial of a Dyadic Yoga Program for Head and Neck Cancer Patients Undergoing Chemoradiation and their Family Caregivers
Kathrin Milbury1, David Rosenthal2, Smitha Mallaiah2, Sania Durrani2, Eduardo Bruera2, Lorenzo Cohen2
1The University of Texas MD Anderson Cancer Center, Houston, United Kingdom;2The University of Texas MD Anderson Cancer Center, Houston, USA
Background/rationale or Objectives/purpose: Chemoradiation (CT) to treat head and neck cancer (HNC) may result in debilitating symptoms and functional problems, and patients are at risk of preventable emergency department (ED) visits and feeding tube (FT) placements. Yoga therapy delivered concurrently to CRT may buffer against treatment-related sequelae. The purpose of this pilot RCT was to establish feasibility and preliminary efficacy of a yoga intervention. Because family caregivers report low caregiving efficacy and high levels of distress, we included them in this trial as active study participants.
Methodology or Methods: HNC patients initiating CRT and their caregivers were randomized to a 15-session yoga intervention or a waitlist control (WLC) group. Prior to CRT and randomization, both groups completed standard self-report measures. Patients’ health utilization was documented over the course of CRT. Dyads were reassessed at the end of CRT.
Impact on practice or Results: We consented 40 dyads and randomized 37 of which 33 completed follow-up assessment. Patients (mean age: 60.3 years, 69% male) and caregivers (mean age: 58.7 years, 76% female, 78% spouses) completed a mean of 13.40 sessions (range 8-15). Relative to the WLC group, patients reported clinically significantly less oral problems (d = 1.13), distress (d = 1.19), constipation (d = .90), fatigue (d = .72), and drowsiness (d = .75) and were less likely to require a FT (P < .05) and visit the ED (P < .05). Both patients and caregivers in the yoga group reported clinically significant improvements in quality of life (patients: d = .41; caregivers: d = .72) relative to the WLC.
Discussion or Conclusions: Yoga therapy appears to be a feasible, acceptable, and possibly efficacious behavioral supportive care strategy for HNC patients undergoing CRT.
704 Mandala and Oncological patients
DANIELA RESPINI1, ELENA TATA2, CRISTINA LUCIA1, PAOLO TRALONGO2
1ASS.MARELUCE ONLUS, SIRACUSA, Italy;2MEDICAL ONC; DEP; UMBERTO I HOSPITAL, SIRACUSA, Italy
Background/rationale or Objectives/purpose: The new awareness of the health system is to welcome the patient in a safe context. The mandala project in an oncology department is inspired by this principle.
The goal was to make available to patients a space in which care is taken of themselves while keeping away the thought of the disease and the consequences related to therapies.
To make available to hospitalized cancer patients, a service that they themselves manage, and if the project can count on all the requested volunteers, even a mandala coloring activity at the patient's bed.
Methodology or Methods: The traveling laboratory of mandala gave the opportunity to all the patients, to care themselves with the activity of coloring mandala. Even though they were seated with the infusions of chemotherapy attacked. And they were so distracted that they use the other hand to color, without thinking if they were able to use the other hand. They just had fun on coloring.
Impact on practice or Results: using the activity of mandala coloring, improve the humor of patients, the concentration and the memory gave and opportunity to have a social group experience and distract the patients from the disease.
Discussion or Conclusions: One of the reasons why the coloring of the Mandala is used in heterogeneous group laboratories is the desire to create a climate of collaboration and cooperation between people whose names and history are unknown. The focal point is the sharing of a moment, united by a common goal: finding an inner balance. This leads to integration and collaboration.
641 GROUP VERSUS INDIVIDUAL ACUPUNCTURE FOR THE TREATMENT OF CANCER PAIN: An analysis of secondary outcomes such as fatigue, sleep disturbances, distress, and social support
Katherine-Ann Piedalue1, Erica Reed1, Jessa Landmann2, Devesh Oberio1, Linda E. Carlson1
1University of Calgary, Calgary, Canada;2Essence Wellness, Calgary, Canada
Background/rationale or Objectives/purpose: Examining the effectiveness of group versus individual acupuncture in cancer survivors for improving cancer-related symptoms of pain (primary outcome), fatigue, sleep disturbances and distress, and social support. This presentation will focus on all secondary outcomes.
Methodology or Methods: A randomized controlled non-inferiority trial comparing Individual acupuncture to Group acupuncture. Inclusion criteria included a minimum pain score >3 on the 10-point Brief Pain Inventory and any type of cancer diagnosis. Patients were excluded if they had received acupuncture in the last 6 months, or were currently on or within one-month of active treatments. Participants across both treatment groups received acupuncture twice a week over 6 weeks (12 sessions). Measures of pain (primary outcome), fatigue, sleep disturbance, distress and social support (secondary outcomes) were assessed pre-post intervention. Changes in secondary outcomes were analyzed using mixed linear effect modeling and non-inferiority was inferred using a non-inferiority margin (θ), difference of change between the two groups (Δ) and 95% CI.
Impact on practice or Results: A total of 75 participants were randomly assigned into group (n = 34) or individual (n = 39). Both groups improved across all out-comes, with social support only improving in group. The non-inferiority hypothesis was supported for psychological distress [θ -7.52 Δ 9.86 95%CI .85–18.86], sleep [θ-1.65 Δ 2.60 95%CI .33–4.88], fatigue [θ 8.54 Δ -15.57 95%CI 25.60–5.54] and social support [θ.26 Δ -.15 95%CI -.42-.13].
Discussion or Conclusions: Non-inferiority of group acupuncture compared to individual acupuncture was met on all secondary outcomes. Group acupuncture exhibited greater improvement across sleep, distress and fatigue.
606 Implementation of standardized Mindfulness-Based group Interventions in gynecological cancer care: A literature review
Jelena Stanic1,2,3, Marie-Estelle Gaignard4, Apostolos Sarivalasis2, Khalil Zaman2, Alexandre Bodmer4, Françoise Jermann4, Jürgen Barth5,6,7, Solange Peters2, Guido Bondolfi4, Manuela Eicher1,2,3
1Institute of Higher Education and Research in Healthcare, Lausanne, Switzerland;2Lausanne University Hospital, Lausanne, Switzerland;3University of Lausanne, Lausanne, Switzerland;4Geneva University Hospital, Geneva, Switzerland;5Universitäts Spital Zürich, Zürich, Switzerland;6University of Zürich, Zürich, Switzerland;7Institute for Complementary and Integrative Medicine, Zürich, Switzerland
Background/rationale or Objectives/purpose: The effectiveness of Mindfulness-Based group Interventions (MBI) on psychosocial outcomes of women affected by gynecological cancers is reported in several meta-analyses. Integrating these interventions in cancer care is recommended. Practically, data regarding feasibility, acceptability, appropriateness, adoption, costs, penetration and sustainability of such interventions in different clinical and cultural contexts are needed.
The aim of this review is to explore the literature regarding the factors that might impact on implementation of MBI in gynecological cancer care, as well as strategies facilitating their implementation.
Methodology or Methods: We performed bibliographic review on PubMed, CINAHL, PsycINFO, Embase, Cochrane Library and ProQuest databases. The following key words were used: tumor∗, tumour∗, carcino∗, neoplasm∗, sarcom∗, blastom∗, malignan∗; breast, genital, fallopian, vagina∗, vulv∗, ovar∗, uter∗, endometri∗, gynecologic∗, gynaecologic∗; mindfulness, meditation, mbsr, mbct, mbcr. No filters were applied. We selected articles and dissertations published from October 2017 to November 2018.
Impact on practice or Results: MBI was feasible for women with breast cancer in several trials. However, implementation factors for MBI in more advanced stages or other gynecological cancers remain poorly described. Overall, MBI trials mainly focused on clinical outcomes, whereas implementation outcomes were insufficiently reported. Information on barriers and facilitators related to the integration, adoption and sustainability of these programs on providers’, clinical staffs’ and organizations’ levels is strongly needed.
Discussion or Conclusions: There is an unmet need to explore the implementation processes, and the challenges of integrating MBI in different contexts. The most effective strategies to apply, in order to facilitate the successful integration to these interventions in cancer care settings has still to be explored.
491 The Perceptions of Medical Marijuana versus Opioids in the Management of Pain Management among Cancer Survivors
Dinorah Martinez Tyson1, Melody Chavez1, Paige Lake1, Victoria Marshall1, Smitha Pabbathi2
1University of South Florida, TAMPA, USA;2Moffitt Cancer Center, Tampa, USA
Background/rationale or Objectives/purpose: The purpose of this study was to explore perceptions of opioid use and alternative therapies among cancer survivors who experience cancer and treatment-related pain.
Methodology or Methods: A purposive sample of 26 cancer survivor were interviewed. Open-ended questions centered on cancer survivors experience with cancer-related pain, the use of opioids and other alternative modalities, such as medical marijuana, to manage pain. Interviews were analyzed using applied thematic analysis techniques.
Impact on practice or Results: The majority of participants were women (96%) with a mean age of 50 and 64% identified themselves as either African American or Latino. Participants shared their cancer-related pain management concerns. Several experienced less than optimal pain management which impacted daily living. Many worried about the negative rhetoric surrounding opioids and feared that the use of such analgesics would lead to addiction. Overall participants preferred alternative pain management methods such as acupuncture, aromatherapy and medical marijuana over opioids. However, cost and insurance coverage issues resulted in poor access to alternative pain alleviating modalities. Of the alternative modalities discussed, medical marijuana was the most salient. Participants believed medical marijuana was a safer and more effective alternative method to assist in pain control. These beliefs and perceptions were often shaped by the media, family, and friends.
Discussion or Conclusions: In the face of the opioid epidemic, many cancer survivors view medical marijuana as a safer alternative than consuming prescription opioid medication. Health care providers need to have an open dialogue about conventional and unconventional strategies when working on a pain management plan with cancer survivors.
360 Rel@x program evaluation protocol: A hypnosis derived communication techniques training for pediatric oncology nurses
Jennifer Aramideh1,2, David Ogez1,2, Terry Mizrahi1, Évelyne Trottier3, Marie-Joëlle Doré-Bergeron4, Michel Duval1,5, Serge Sultan1,2,5
1Department of Hematology-Oncology, CHU Sainte-Justine, Montreal, Canada;2Department of Psychology, Université de Montréal, Montreal, Canada;3Department of Emergency, CHU Sainte-Justine, Montreal, Canada;4Department of Pediatrics, CHU Sainte-Justine, Montreal, Canada;5Department of Pediatrics, Université de Montréal, Montreal, Canada
Background/rationale or Objectives/purpose: A training program in hypnotic communication (HC) was developed for pediatric nurses in oncology. This full pilot study aims to evaluate: (1) nurses’ relational and technical skills acquisition in a simulation protocol and (2) changes in patients’ pain and distress.
Methodology or Methods: Rel@x is a manualized HC training program (4x2 hours): 2 sessions on relational aspects and 2 sessions on the chosen techniques (“preferred place” or “magic glove”). For objective 1, 32 pediatric oncology nurses and 32 nursing students will participate in the training and skills assessment. Video-recorded simulations with young actors will be conducted in pre-post-training and nurses’ skills acquisition will be assessed using the Sainte-Justine Hypnotic Communication Assessment Scale (SJ-HCAS). For objective 2, HC implementation will be evaluated only among the pediatric oncology nurses. They will perform venipunctures with 10 consecutive independent patients aged 4+ years old. Pre- and post-training pain and distress will be assessed with visual analogue scales. Nurses will also be invited to self-assess their practice during each interaction.
Impact on practice or Results: The SJ-HCAS total, relation and technique scores will be compared by MANCOVA. A total score of 70% on the SJ-HCAS will be considered a good HC mastery. A repeated MANOVA analysis will be conducted on patients’ pain and distress scores and associated with nurses’ HC skills acquisition in multilevel modeling.
Discussion or Conclusions: This study will provide pediatric care centres with a manualized training program addressing patients’ pain and distress. If significant pre-post changes are found, this program could be studied in efficacy trials.
244 Clinical observation of modified Xiaoyaosan Prescription in the treatment of depression during adjuvant chemotherapy after breast cancer operation
LI dongfang1,2, JIAO jiao1, LUO kanghua3, LI yueheng4, TANG jiyun5
1The Affiliated Cancer Hospital of Xiangya School of Medicine, Changsha, Hunan, China;2 Central South University, Changsha, Hunan, China;3The Central Hospital of Shaoyang, Shaoyang, Hunan, China;4The Affiliated Cancer Hospital of Xiangya School of Medicine, Central South University, Changsha, Hunan, 410000, China;, Changsha, Hunan, China;5Hengyang hospital of traditional Chinese medicine, Hengyang, Hunan, China
Background/rationale or Objectives/purpose: The purpose of our study is to observe the clinical efficacy of Xiaoyaosan Prescription, a traditional Chinese Classical prescription (JingFang), in the treatment of depression patients during adjuvant chemotherapy after breast cancer operation.
Methodology or Methods: Using prospective randomized controlled study, patients are divided into control group(Lifemin tablet) and traditional Chinese medicine group(Xiaoyaosan Prescription),within 8 weeks. The main observation are SDS, HAMD, TCM syndromes scores.
Impact on practice or Results: By comparing two groups’ SDS score, HAMD score, TCM syndrome score, after t test analysis,which indicate that TCM group value is lower than control group, so we can conclude that TCM group's condition treatment is better than the control group.
Discussion or Conclusions: Xiaoyaosan Prescription can effectively relieve depression state in patients during adjuvant chemotherapy after breast cancer operation, which indicates a high clinical value of traditional Chinese medicine in treating patients with depression.
120 The Psychological Benefits of the use of Integrative Oncology techniques in terminal cancer patients
Private Practice, Amparo, Brazil
Background/rationale or Objectives/purpose:
Evidence-based Integrative Medicine uses all the treatments resources to care for cancer patients, their family and health team seeking well-being and global perspective of care. Addressing the psychological, mental and social aspects during the process of seeking a broadened sense of cure. Through this perspective, cancer patients must have their well-being and autonomy as a priority, even when in terminal cases. This case report a terminal patient diagnosed with Ependymoma from one year and five months up ten years old, when he passed away.
Methodology or Methods: Methodology:
In the last three months of life, the patient was treated with Integrative Oncology techniques such as Music therapy and Meditation used for well-being of the patient and his relatives. Although speech, mobility, respiratory and feeding abilities were impaired, the patient remained conscious.
Impact on practice or Results: Impact on practice:
These practices influenced the last three months of the patient's life with less agitation, fewer clinical changes, less medication, reducing anxiety and promoting a peaceful remembrance of the past, culminating in what is described as a ‘good death’. It also contributed to calm and acceptance of death by parents, minimizing the difficult and complex process of terminality and affecting positively the grief.
Discussion or Conclusions: Discussion:
This case report highlights the positive impact of Integrative Oncology to take care for very ill patient dealing with terminality and it was possible to minimize the financial, social and psychological burden of the patients and their relatives. It is clear that this approach should be used for patients in terminal cancer care.
G. Community based organizations
544 Silent no more: A community living with lung cancer finds its voice
Diane Manii MSW RSW1, Jill Hamer Wilson BEng, BEd, MTS1, Paul Wheatley Price BSc, MBChB, MRCP (UK)2,1
1Lung Cancer Canada, Toronto, Canada;2The Ottawa Hospital, Ottawa, Canada
Background/rationale or Objectives/purpose: Canada's lung cancer mortality rate among women in 2012 was 47.0 per 100,000 compared with 26.5 per 100,000 among peer countries. In 2016 a regional group was mobilized by Lung Cancer Canada to brain storm on how women with lung cancer could be better served, as well as raise awareness about the disease.
Methodology or Methods: Rather than a traditional needs assessment, we offered a 6-week psycho-educational group with pre and post testing to assess the feasibility of running a lung cancer support group. We also sought insight into what women with lung cancer were looking for and to build a reproducible model of intervention. The outcomes demonstrated that several quality of life domains improved. All participants agreed the group helped them live and cope better with cancer.
Impact on practice or Results: A monthly meeting has followed this group and is now open to both genders. The need for advocacy and awareness was an imperative for participants. The sense of outrage that death rates are so high, that research dollars are limited and that until recently few new treatments were offered. Participants created on line groups, personal blogs, met with MP's, wrote articles and presented at conferences. Participants have started regular information sessions at the cancer centre and coordinated a regional ‘lung cancer patient summit’.
Discussion or Conclusions: The broad activities initiated by this group is leading to similar activities across the country. A grass root movement is ensuring that lung cancer patients are heard, understood and treatment options offer long term outcomes.
259 A Community Guide to Cancer Nutrition
George Brown College, TORONTO, Canada; Gilda's Club Greater Toronto, TORONTO, Canada
Background/rationale or Objectives/purpose: Gilda's Club Greater Toronto (GCGT) is where people whose lives have been touched by cancer come to obtain practical support. Nearly 50% of Canadians will be diagnosed with cancer in their lifetime and 25% are expected to die from cancer (Canadian Cancer Statistics Advisory Committee, 2018). Consequently, there is a demand to meet the needs of those dealing with the social, emotional and nutritional repercussions of living with cancer. At GCGT Chef Amy Symington, MSc runs nutrition programming that meet these needs, including a supper program where she and her volunteers, often culinary nutrition students from George Brown College (GBC) provide health-promoting meals to the members. allowing members to come together in a supportive and empowering community setting.
Methodology or Methods: There is a need in the cancer care realm for a well-researched nutrition guide that can be used by cancer organizations to run successful nutrition programming. Chef Symington, GCGT's Culinary Nutrition Program Coordinator and also a nutrition professor, chef and researcher at GBC, after obtaining funding from SSHRC, researched and produced a comprehensive, accessible guide for cancer nutrition.
In addition to the guide, Symington has also collected quantitative and qualitative data from 40 GCGT members regarding the impact of their nutrition programming. The data will now be analyzed and the findings used to write a report.
Impact on practice or Results: The final product is a research focused, evidence-based guide containing recipes and practical information on how to run cancer focused nutrition programming.
Discussion or Conclusions: This guide and research will provide insight related the benefits of cancer nutrition programming.
H. Culture and sex/gender
698 Emotional instability, sexual abuse, and infidelity as correlates of marital conflict among cancer patients in Ibadan
Emmanuel Terzungwe Agune
University of Ibadan, Ibadan, Nigeria
Background/rationale or Objectives/purpose: Marital conflict in research has been linked with several variables which results in divorce or most times separation. This study therefore, investigated on emotional instability, sexual abuse, and infidelity as correlates of marital conflict among cancer patients in Ibadan
Methodology or Methods: The study utilized cross sectional survey design with the use of questionnaire for data collection which involved emotional instability scale, sexual abuse scale, infidelity scale and marital conflict scale.
Impact on practice or Results: The results indicated that there was a significant relationship among emotional instability, sexual abuse, infidelity and marital conflict. Result also shows that there was a significant joint influence of emotional instability, sexual abuse and infidelity on marital conflict among cancer patients.
Discussion or Conclusions: Emotional instability, sexual abuse and infidelity should be handled with caution as they are capable of destroying a home
541 The experience of cervical cancer considering gender perspective: gender as another source of social inequity in health in Argentina
María Magdalena Navarro
Public Maternal and Child Hospital- Hospital Público Materno Infantil, Salta, Argentina
Background/rationale or Objectives/purpose: The purpose of this research was to know and describe the meanings attributed to the experience of suffering cervical cancer of women receiving oncological treatment in the Public Maternal and Child Hospital in Salta, Argentina, highlighting a gender perspective.
Methodology or Methods: Theoretical and qualitative methodological tools developed by Psychology and Anthropology were taken, recovering the analysis of Illness Narratives to address the suffering of women. Semi-structured interviews were conducted with fifteen adult women who received chemotherapy. A theoretical sampling of intentional type was used. Design was exploratory- descriptive.
Impact on practice or Results: Women did not have an early diagnosis. The reasons why they did not have timely access to the health system were related to meanings of the illness experience that refer specifically to cultural constructions of gender. The validity of the social myth Woman = Mother was found and their health care is subordinated to it. Screening was not relevant, either due to misinformation, lack of awareness, modesty, fears, shame or sexual taboos. Their daily lives were marked by gender violence, poverty and social vulnerability. Another reason was related to structural weaknesses of the health system.
Discussion or Conclusions: In Argentina, cervical cancer is considered the oncological illness that most strongly shows the social inequalities in health, being the province of Salta one of the poorest and with the highest mortality for this cause. This research reflects gender as an important source of social inequity in health. This is a complex problem that deserves to be deepened and transmitted in order to improve the prevention and assistance of cervical cancer.
171 Body image among oncology patients
Karolina Juszczyk, Paweł Izdebski
Kazimierz Wielki University, Bydgoszcz, Poland
Background/rationale or Objectives/purpose: The aim of the presented study is to analyze the problem of body image among cancer patients, with the particular focus on the following varieties: type of cancer, applied medical procedures, age and sex.
Methodology or Methods: The study consisted of 197 patients with diagnosed cancer aged 27–83 (M = 57,53, SD = 11,76). Patients answered to the Body Image Test – Cancer (Test Obrazu Ciała – Choroba Nowotworowa) (Izdebski's & Kawiecka-Dziembowska). This a quick tool which measures perception of one's body in cancer patients.
Impact on practice or Results: Results
Based on the carried out analyses it was stated that females had more negative perception of own body than males (t = 3,07, p = 0,002). Moreover, it was observed that middle-aged patients and patients in late adulthood presented worse body image. It was not stated that varieties such as applied medical procedures or type of cancer diversified patients.
Discussion or Conclusions: Based on the carried out analyses it is possible to claim that females aged 46–65 are particularly sensitive to fluctuations happening in the body due to the illness. Further study on body image in this group is necessary, because the body image is a significant part of building the identity.
41 Male 's quality of life in head and neck cancer outpatients: The role of body image
PeiChiung Tu1, MuTe Wang2
1Chung Yuan Christian University, Tao yuan, Taiwan;2Fo Guang University, Yilan, Taiwan
Background/rationale or Objectives/purpose: After a cancer diagnosis, surgery and adjuvant therapy may lead to significant changes in appearance, especially for the patients with head and neck cancer. Although a few studies have found that the change in body image may worse the adaption to cancer, the relationship between them has still unresolved, especially for the male outpatients. This study adopted cognitive-behavioral perspectives of body image as a framework and aimed to examine the effect of two types of body image attitudes, defined as body image evaluation and body image investment, on the health function among male head and neck cancer outpatients during the six months to one year post-diagnosis period.
Methodology or Methods: This study conducted a cross section design. A total of 136 male outpatients diagnosed with head and neck cancer were recruited. Four ratings scales were used to assess appearance changes caused by cancer, patients’ attitudes towards body image, and mental health, including the Head and Neck Cancer Appearance Change Scale, Body Image Scale, Appearance Schema Inventory-Revised, and Functional Assessment of Cancer Therapy-Head and Neck Scale.
Impact on practice or Results: Regression analysis showed that age, educational status, body appearance changes, body image evaluation, and self-evaluative salience part of body image investment negatively predicted health function, especially in the physical health.
Discussion or Conclusions: This study suggested that less evaluating oneself by body appearance and keeping better satisfactions of one's appearance changes caused by cancer played an important role in improving adaptation to cancer among male head and neck cancer outpatients. These results can be further investigated using a longitudinal design.
25 Distress and quality of life: An exploratory study of Chinese-speaking cancer patients and family caregivers in Canada
Joyce Lee1,2, Richard Sawatzky3,4, Carolyn Gotay2, Arminée Kazanjian2
1BC Cancer, Vancouver, Canada;2University of British Columbia, Vancouver, British Columbia, Vancouver, Canada;3Trinity Western University, Langley, Canada;4Centre for Health Evaluation and Outcome Sciences, Vancouver, Canada
Background/rationale or Objectives/purpose: This study explores the relationships of patient distress, family caregiver distress and patient quality of life (QOL) in a Chinese-speaking cancer population, using a comparison group of Anglophone patients and family caregivers in British Columbia, Canada.
Methodology or Methods: Quantitative regression analysis of survey data was conducted to examine the direct and indirect effects of patient and family caregiver distress on patient QOL based on data from 29 Chinese-speaking and 28 Anglophone dyads. Semi-structured interviews were conducted with a purposive sample of ten Chinese-speaking patients and six family caregivers to further clarify the interrelationships among patient distress, family caregiver distress and patient QOL.
Impact on practice or Results: Patient distress was a significant predictor of patient QOL (β = -.79). The effects of patient age on patient emotional well-being were mediated by patient distress, such that lower distress in older patients explained better emotional functioning. A key theme from the qualitative data analysis was the emotional regulation of patient and family caregiver, where both sought to regulate their emotions to protect each other from further cancer-related distress.
Discussion or Conclusions: These results highlight the importance of understanding the patients’ and family members’ cultural and social context, in patient- and family-centred care. Where age may affect distress and a patient's QOL, it is recommended to tailor interventions to address the specific concerns that align with patients and family members in younger and older age groups. Further, the patient-family caregiver dyad needs to be considered as the unit of care.
I. eHealth research & Interventions
751 E-cigarettes as a Smoking Cessation aid in Cancer Patients: Health Professionals knowledge, attitude and current practice
Jo Brett1, Fiona Matley1, Emma Davies1, David Foxcroft1, Eila Watson1, Paul Aveyard2, Brian Nicholson2, Lesley Sinclair3, Shiroma De Silva Minor4, Sarah Jakes5
1Oxford Brookes University, Oxford, United Kingdom;2University of Oxford, Oxford, United Kingdom;3University of Stirling, Stirling, United Kingdom;4Oxford University Hospitals NHS Trust, Oxford, United Kingdom;5New Nicotine Alliance, London, United Kingdom
Background/rationale or Objectives/purpose: E-cigarettes have become increasingly popular as a smoking cessation aid and a positive public health stance in the UK supports use of e-cigarettes in reducing the health-related harms of tobacco, including in cancer patients who smoke. However, their use remains controversial, and this study explores health professionals’ knowledge, attitudes and current practice on e-cigarettes as a smoking cessation aid in cancer patients
Methodology or Methods: This study was a national online survey to investigate UK health professionals’ knowledge, attitudes, and current practice of e-cigarettes as a smoking cessation intervention in cancer patients. 506 health professionals (HPs) completed the survey including GPs (n = 103), oncologists (n = 102), cancer surgeons (n = 100), practice nurses (n = 102), cancer nurse specialists (n = 99). The sample was stratified by NHS regions
Impact on practice or Results: Twenty nine percent of HPs would not recommend e-cigarettes to cancer patients who smoke, while 38% believed colleagues would feel uncomfortable about recommending e-cigarettes to cancer patients. The majority of respondents reported that e-cigarettes were either banned or only allowed in designated tobacco smoking areas in their organisation. Over half of HPs believed their knowledge was not sufficient to recommend e-cigarettes to cancer patients, and 25% did not know whether e-cigarettes were less harmful than smoking tobacco cigarettes
Discussion or Conclusions: While UK health policy support e-cigarettes as a smoking cessation aid, this has not yet been adopted by local health organisations, causing barriers to and uncertainty around promoting use of e-cigarettes in cancer patients that smoke. Training of health professionals and local adoption of e-cigarette advice are needed
700 Improving Adherence to Self-management Behaviors in Adolescent and Young Adult Cancer Stem Cell Transplant Survivors Using a Gamified On-line Intervention
Susan Peterson1, Jeffery McLaughlin2, Demetrios Petropolous1, Maria Camero1, Martha Askins1
1The University of Texas MD Anderson Cancer Center, Houston, USA;2Radiant Digital, Houston, USA
Background/rationale or Objectives/purpose: Adolescent and young adult (AYA) cancer patients undergoing hematopoietic stem cell transplantation (SCT) face a life-threatening, intensive treatment requiring lengthy hospitalization. SCT survivors follow a rigorous self-management regimen during recovery, including adhering to multiple medications, and maintaining adequate hydration and physical activity, to avoid serious consequences. Adherence is challenging for AYA survivors, whose developing autonomy and enjoyment of peers is juxtaposed with constraints of cancer treatment. We developed an online interactive intervention for AYA SCT survivors incorporating game mechanics to promote adherence to post-transplant self-management behaviors. Intervention development was guided by a conceptual framework wherein adherence to positive self-management behaviors is promoted by addressing psychological, physical and cognitive barriers to motivation and by enhancing resiliency, perceived social support and intrinsic/extrinsic reinforcement. We evaluated the intervention's technical merit, feasibility and acceptability.
Methodology or Methods: AYA allogeneic SCT survivors age 15–28 were invited to access the intervention site for 3 weeks; subsequently, they completed an evaluation comprising the 52-item Technology Acceptance Measure (TAM), adapted for this study, and a semi-structured interview.
Impact on practice or Results: Mean age of the sample (n = 27) was 24.1 years (SD = 2.2, range 20–28), 63% were female, and 19% and 30% were Black and Hispanic race/ethnicity, respectively. Mean TAM score was 6.1 (range 1–7); ratings indicated high perceived enjoyment, and high behavioral intention to use the system. Participants also desired information on long-term coping after SCT recovery.
Discussion or Conclusions: Results showed high usability, feasibility and satisfaction ratings with the intervention, and suggested its potential as a platform to also improve quality of life post-SCT recovery.
699 Internet use in an old age sample to improve awarenes towards cancer risk
Tania Estapé1, Jordi Estapé1, Iraida V. Carrión2, Raquel Vila1
1Fefoc Fundació, Barcelona, Spain;2University of South Florida, Florida, USA
Background/rationale or Objectives/purpose: Old people is misinformed and passive towards cancer. Objective:to improve knowledges and attitudes towards cancer in an old age sample via internet
Methodology or Methods: We use a tool in our old people and cancer website containging information on prevention,early detection and eliminat false believes towards cancer.It includes animated drawings.
Impact on practice or Results: Results:6 months after a questionaire on general knowledge towards cancer and a later talk on cancer prevention,early detection and psyhosocial aspects related to cancer,144 old people were given the password to enter in internet tool to have a recall on hot points.Previously they answer some qüestions on internet:58% use it.Among these 58% use to search for information,40% say is not easy for them to find what they want.30% needs help to navigate.Among those who never use internet main reasons where they find difficult or have no interest.Related to our internet tool,22% have used it.67% found that it was easy to enter.18% say they needed help to enter.81% considered it a useful tool.Of those who did not use it 46% say they did not remember to use it and 33% say that it is because they usually do not useinternet.One said he had not found anyone to help him.In spite of low usage,we found that people who have used it improved their knowledge in more awareness of cancer risk,chances of prevention an early detection and low negative attitudes towards cancer in general (statistically significant).
Discussion or Conclusions: This is a good way to follow using an e-health tool with old people towards cancer.
677 i-Restoring Body Image After Breast Cancer (i-ReBIC): Results from a pilot trial evaluating an online group therapy
Lianne Trachtenberg1,2, Jiahui Wong1, Heather Rennie3, Deborah McLeod4, Yvonne Leung1, Mary Jane Esplen1,2
1de Souza Institute, UHN, Toronto, Canada;2University of Toronto, Toronto, Canada;3The Counselling Group, White Rock, Canada;4Dalhousie University, Halifax, Canada
Background/rationale or Objectives/purpose: Up to 77% of women treated for breast cancer report body image distress, with longitudinal research indicating persistent disturbance five years following treatment. A novel face-to-face group therapy, Restoring Body Image after Cancer (ReBIC) was tested in a randomized trial and demonstrated significant impacts on body image distress and quality of life (QOL). To provide greater access to ReBIC, the intervention is being translated to an online version (iReBIC), and a pilot trial is being conducted to examine its feasibility, acceptability and preliminary effects.
Methodology or Methods: The translated iReBIC is now being delivered via the well-established Cancer Chat Canada online platform at de Souza Institute, to reach a sample size of six groups totalling 36 participants. Data collection will include participation rate, drop out rate, descriptive statistics and paired t-tests on the primary outcome of body image distress and secondary outcomes of psychosexual functioning and QOL.
Impact on practice or Results: A total of 22 women have participated in the groups, with the remaining two groups to be completed by June 2019. Preliminary effects suggest feasibility with an online format. Results of the pilot trial will be presented including the primary and secondary outcomes and qualitative data.
Discussion or Conclusions: Findings indicate that an in-person group therapy can be translated into an online format. Preliminary findings are consistent with improvements in body-image distress. If feasibility and acceptability are established, results will inform a larger randomized controlled trial. Online psychosocial care can improve access to groups across Canada designed to address persistent survivorship issues.
661 An Internet-based Relational Intimacy and Sexual Enhancement (RISE) Intervention for Couples Experiencing Sexual Distress following Breast Cancer: Outcomes and Recommendations
Kimberley Cullen1, Karen Fergus1,2
1York University, Toronto, Canada;2Sunnybrook Health Sciences Centre, Toronto, Canada
Background/rationale or Objectives/purpose: Despite the well-established evidence that many breast cancer survivors encounter some degree of difficulty regarding their sexuality, support for women and couples experiencing sexual distress as a result of breast cancer is lacking. Accordingly, breast cancer survivors have identified sexuality as a top unmet need that continues to be under-addressed by health care systems world-wide.
Methodology or Methods: The RISE intervention is an original, couples-based program that was developed to reduce sexual distress by focusing on domains previously identified as relevant to sexual rehabilitation in breast cancer (e.g., good communication, acceptance and flexibility, relational intimacy, sensate focusing, body image). Fourteen couples received six sessions of psychosexual counseling delivered via video-conferencing, and completed questionnaires concerning sexual functioning, marital quality, and psychological adjustment at baseline, post-treatment, and three-month follow-up, along with satisfaction surveys and post-treatment interviews. Dyadic analysis based on multilevel modeling was used to evaluate the intervention's effectiveness.
Impact on practice or Results: Findings suggest that the RISE intervention was effective at alleviating sexual distress and improving sexual relationships, with the vast majority of couples reporting that they were satisfied with the program. The use of eTherapy was also widely accepted by participants, who highlighted several advantages of this modality.
Discussion or Conclusions: The current study fills a notable gap in the support available to couples experiencing sexual difficulties following breast cancer. Participants’ feedback suggests that eTherapy for sexual distress should be considered when not otherwise readily available and/or easily accessible. Recommendations for researchers and clinicians involved in the design, evaluation, and provision of online psychosexual interventions are also discussed.
599 Living Well after Breast Cancer: the effect of a weight loss intervention (versus usual care) on psychosocial outcomes in early-stage breast cancer survivors
Marina Reeves1, Elisabeth Winkler1, Nicole McCarthy2, Sheleigh Lawler1, Elizabeth Eakin1, Wendy Demark-Wahnefried3
1The University of Queensland, Brisbane, Australia;2Icon Cancer Care, Brisbane, Australia;3University of Alabama at Birmingham, Birmingham, USA
Background/rationale or Objectives/purpose: Few weight loss trials in breast cancer survivors have examined the benefits of on psychosocial outcomes. This trial evaluated a 12-month telephone and text message-delivered weight loss intervention (vs usual care) on weight change and psychosocial outcomes including quality of life (QoL) and fear of cancer recurrence (FCR).
Methodology or Methods: Women (18–75 years; BMI 25–45 kg/m2) diagnosed <2-years prior with stage I–III breast cancer were recruited and randomized to a weight loss (diet and physical activity) intervention (n = 79) or usual care (n = 80). The intervention group received 22 coaching telephone calls, with optional text messages, over 12-months. Data were collected at baseline, 12- (end-of-intervention; 82% retention) and 18-months (80% retention). QoL was measured using the PROMIS Global Health Scale; FCR measured using the Concerns About Recurrence Questionnaire (CARQ-4). Intervention effects, assessed by linear mixed models, accounted for repeated measures and baseline values.
Impact on practice or Results: Participants were (mean ± SD) 55 ± 9 years, 10.7 ± 5.0 months post-diagnosis and 54.4% Stage I cancer. Significant intervention effects (intervention minus usual care) were observed for weight at end-of-intervention (-4.5% [95%CI: -6.5, -2.5]), and 18-months (-3.1% [-5.3, -0.9]) and for Global Physical Health Score (T score; 2.66 [0.71, 4.6])at end-of-intervention only. Significant within-group improvements in the intervention group were observed for Global Mental Health Score at end-of-intervention only. Both groups significantly improved FCR at end-of-intervention and 18-months.
Discussion or Conclusions: Weight loss had some benefit on psychosocial outcomes in breast cancer survivors. Further research in those experiencing poor psychosocial wellbeing (e.g. very high FCR) is warranted to inform practice.
565 Development of novel online training programs to facilitate effective family-carer involvement in oncology: The eTRIO trial
Ilona Jursakova1,2, Phyllis Butow3,2, Rachael Keast3, Judy Kay4, Penny Schofield5,6, Frances Boyle7, Patsy Yates8, Daniel Costa9,10, Rebekah Laidsaar-Powell1
1Centre for Medical Psychology & Evidence-based Decision-making (CeMPED), School of Psychology, University of Sydney, Sydney, Australia;2Psycho-Oncology Cooperative Research Group, University of Sydney, Sydney, Australia;3Centre for Medical Psychology & Evidence-based Decision-making (CeMPED), School of Psychology, University of Sydney, Sydney, Australia;4School of Information Technologies, University of Sydney, Sydney, Australia;5Peter MacCallum Cancer Centre, Melbourne, Australia;6Swinburne University, Melbourne, Australia;7Patricia Ritchie Centre for Cancer Care & Research, Mater Hospital, Sydney, Australia;8Queensland University of Technology, Brisbane, Australia;9Pain Management Research Institute, Royal North Shore Hospital, Sydney, Australia;10Sydney Medical School, University of Sydney, Sydney, Australia
Background/rationale or Objectives/purpose: While family carer involvement is often considered an important aspect of cancer care, many carers report feeling disempowered and ill-equipped to support patients. Our group published the evidence-based ‘TRIO Guidelines’ to improve clinician's engagement with carers and management of challenging situations in the cancer setting. To facilitate implementation of these guidelines into clinical practice, we have developed two novel online education modules: for oncology clinicians (eTRIO) and for cancer patients and carers (eTRIO-pc).
Methodology or Methods: The eTRIO modules were based on extensive prior research by our group (systematic reviews, qualitative interviews, consultation audiotape analyses, and Delphi consensus guidelines). The draft module content and interactive activities were iteratively reviewed by an expert advisory group involving academic/clinical experts (n = 13) and consumers (n = 5).
Impact on practice or Results: Both programs utilise cutting-edge interactive web-technology to promote learners’ engagement and uptake of key skills. The modules include 11 professionally produced short films (with embedded trigger activities) modelling effective behaviours in clinical scenarios. Experiential content is provided via video-messages from consumers and clinicians. A national RCT is currently evaluating the effectiveness of the combined modules in improving: i) carer involvement in consultations, ii) stakeholders’ self-efficacy in clinician-patient-family communication, iii) patient/carer psychosocial outcomes and iv) healthcare costs.
Discussion or Conclusions: The eTRIO programs have been rigorously developed to meet the needs of clinicians, patients, and carers in improving effective and useful carer involvement. The interventions aim to shift the status of informal carers from an underserved, vulnerable, and ill-equipped population to being confident, informed, and supported partners in cancer care.
564 Facilitating a SEAMLESS transition to survivorship: Lessons from a clinical trial evaluating a SmartphonE App-based MindfuLnEss intervention for cancer SurvivorS
Utkarsh Subnis1, Linda Carlson1, Patricia Tang1, Norman Farb2, Bechara Saab3, Mark Thoburn3, Peter Faris1
1University of Calgary, Calgary, Canada;2University of Toronto, Toronto, Canada;3Mobio Interactive Inc., Toronto, Canada
Background/rationale or Objectives/purpose: Smartphone app-based digital health interventions (DHIs) are an innovative way to deliver psychosocial cancer-care, especially during phases of heightened-stress. Additionally, DHIs can reach cancer patients unable to participate in face-to-face interventions due to compromised immunity, negative symptoms, scheduling conflicts and geography. In the SEAMLESS study, we developed a mobile app-based mindfulness intervention for cancer survivors post-treatment.
Methodology or Methods: The DHI was delivered through a smartphone app called Am, which had pre-recorded audio lectures and guided meditations in a sequence or journey. The SEAMLESS study is a randomized wait-list controlled trial, which evaluates Am's effectiveness for reducing stress (primary outcome), anxiety, depression, fatigue and fear of cancer recurrence in cancer survivors who have completed all treatments for 2 weeks or more. Outcomes were collected using the web-based software, REDCap at 1) baseline, 2) mid-point 3) immediately post-intervention, 4&5) 3 and 6 months follow-up post-baseline.
Impact on practice or Results: Mobile apps and similar DHIs hold enormous promise for improving health outcomes and healthcare delivery by improving accessibility, efficiency, personalization, and are scalable across populations and vast geographies. Another advantage of app-based interventions is their existing popularity and availability across demographics, although evidence regarding their efficacy is yet to be established. This study provides a model for the development and evaluation of mobile-app based psychosocial interventions across the cancer-care trajectory, especially during survivorship.
Discussion or Conclusions: This is the first Canadian trial to test the efficacy of an app-based mindfulness intervention for cancer survivors, which if helpful, could be made easily available for psychosocial care at cancer centres worldwide.
560 Interventions and tools to improve carer involvement in consultations: A review
Rachael Keast1, Rebekah Laidsaar-Powell1, Phyllis Butow1,2, Daniel Costa3,4, Ilona Juraskova1
1Centre for Medical Psychology & Evidence-based Decision-making, School of Psychology, University of Sydney, Sydney, Australia;2Psycho-Oncology Cooperative Research Group, University of Sydney, Sydney, Australia;3Pain Management Research Institute, Royal North Shore Hospital, Sydney, Australia;4Sydney Medical School, University of Sydney, Sydney, Australia
Background/rationale or Objectives/purpose: While family carers are often involved in medical consultations and decisions, some report feeling disempowered, overwhelmed, and unsure of their role. The aim of this review was to ascertain what guidance currently exists for family carers on how to be effectively involved in their loved one's consultations, by reviewing the academic evidence-base as well as publicly available web-resources for carers.
Methodology or Methods: Empirical studies of carer-directed interventions were identified via Medline, Scopus, CINAHL, PsycINFO databases. Searches were also performed using lay search strings on Google, to identify websites directed at carers that provided information on being involved in consultations, communicating with health professionals, patient advocacy, or treatment decision-making.
Impact on practice or Results: Twelve eligible studies were found in academic databases, most targeting carers in the cancer setting. Interventions included question prompt lists, communication skills workshops and coaching, checklists and written guides. Positive carer outcomes of some interventions included increased self-efficacy, greater involvement in consultations and reduced distress. However, only two interventions were rigorously tested in RCTs. Google searches yielded 24 relevant carer-specific websites, including nine targeting carers in oncology. Websites provided advice on preparing for and participating in consultations.
Discussion or Conclusions: While some interventions and websites are available to guide family carers’ involvement in consultations, few adequately address or model how carers can be involved in decision-making or navigate challenging situations (such as advocating for the patient's needs). Comprehensive evidence-based resources informing carers and modelling effective carer involvement are needed to address the paucity of guidance in this area.
517 Psychological implications and coping strategies to breast cancer in the pre -post and follow up surgical treatment period
Patrizia DOrangricchia1, Naida Faldetta2
1Department of Oncoplastic Surgery of Breast Unit.V; Cervello Hospital Palermo, Palermo, Italy;2Department of Oncoplastic Surgery of Breast Unit.; Cervello Hospital Palermo, Palermo, Italy
Background/rationale or Objectives/purpose: Objectives: The aim of present study was to evaluate psychological implications related to the diagnosis of breast cancer. Specifically, we want to observe how levels of anxiety, depression, stress and coping strategies can change during the three most stressful phases of the therapeutic period such as pre and post- surgery and follow-up.
Methodology or Methods: Methods:120 women were recruited for this cross-sectional study before and after breast cancer surgery and at follow up. Each participants had filled self-report questionnaires assessing distress (Distress Thermometer Scale), anxiety and depression (Hospital Anxiety and Depression Scale, HADS) and adjustment to Cancer (MINI-MAC). Correlation, linear regression and conditional process analysis was used to explore relationships between predictor variable and psychological outcomes (anxiety, depression, distress, coping strategies).
Impact on practice or Results: Results: Significant correlations were found among the observed variables. High levels of distress and anxiety were observed in the pre-surgical period instead depression symptoms are more evidence in post-surgical period. The results highlighted that coping strategies were the strongest predictors of psychological symptoms. High levels of anxiety were identified more in patients who used hopeless and anxious preoccupation coping strategies whilst patients with a fighting spirit and a fatalistic had lower levels of anxiety and depression.
Discussion or Conclusions: Conclusion and clinical implications: Behavioral strategies that promote active modalities would be more effective and favor better therapeutic compliance compared to more passive characterized by feelings of helplessness and desperation. Identification of early and significant predictive factors of adaptation can provide an opportunity to development targeted and effective programs to prevent psychological stress of oncological disease.
515 PSYCHOLOGICAL FLEXIBILITY AS PREDICTOR IN PATIENTS’ ADJUSTMENT TO CANCER: A SYSTEMATIC REVIEW
Patrizia Dorangricchia1, Nicola Lo Savio2, Giovambattista Presti3
1Department of Oncoplastic Surgery of Breast Unit., Palermo, Italy;2Cognitive Behavioral therapy Tolman Institute, Palermo, Italy;3 3 Department of Human and Social Sciences, University of Enna “Kore”, Enna, Italy
Background/rationale or Objectives/purpose: OBJECTIVE: We reviewed studies that evaluated the relationship between psychological flexibility and psychological co-morbility such as anxiety, depression and distress.
Methodology or Methods: METHOD: The Cochrane library, MEDLINE, EMBASE, CINAHL Plus (EBSCO), and PsycINFO, were searched using this MeSH terms “Acceptance and Commitment therapy” or “ACT” or “psychological flexibility”, cancer, oncology, or distress, or “defusion, “depression.” Articles retrieved were published between 2015 to October 2018. The search, data extraction, and quality assessment were performed by two of the authors. Based on the data extraction and quality assessment, the level of evidence was determined.
Impact on practice or Results: RESULTS:Out of 1240 articles, 10 eligible articles were included in this review. The selected studies pointed out to three main conclusion: (1)Psychological Flexibility is often invalidated by the cognitive and emotional repertoire that patients develop, especially when they use mechanisms of thought avoidance and control to manage and protect themselves from the emotional impact of the disease and related therapy, (2)Psychological flexibility was a strong predictor of better adjustment to cancer and quality of life, (3) Psychological flexibility can be improved with Mindfulness and Acceptance based interventions such as Acceptance and Commitment Therapy.
Discussion or Conclusions: Conclusion and clinical implications:The identification of early and significant predictors of adaptation such as psychological flexibility may offer an opportunity for the development of targeted and effective programs to prevent (and not only reduce) the biopsychosocial burden of cancer. Hight-quality and well-designed controlled trials are needed to further explore the results so far published.
514 PSYCHOLOGICAL FLEXIBILITY AS PREDICTOR AND TARGET FACTOR IN PATIENTS’ ADJUSTMENT TO BREAST CANCER
Patrizia Dorangricchia1, Nicola Lo Savio2, Naida Faldetta3, Giovambattista Presti4
1Department of Oncoplastic Surgery of Breast Unit; V; Cervello Hospital, Palermo, Italy;2Cognitive behavioral therapy Tolman Institute, Palermo, Italy;3Department of Oncoplastic Surgery of Breast Unit., Palermo, Italy;4Department of Human and Social Sciences, University of Enna “Kore”, Enna, Italy
Background/rationale or Objectives/purpose:
Objectives:The goal of the present study was to examine the predictive role of Psychological Flexibility in adjustment to breast cancer, and to identify its possible correlations with the development of psychological co-morbidity such as depression, anxiety or distress.
Methodology or Methods: Methods:150 women were recruited for this cross-sectional study before and after breast cancer surgery and at follow up. Each participant filled self-report questionnaires assessing cognitive fusion (The Cognitive Fusion Questionnaire, CFQ), psychological flexibility (Acceptance and Action Questionnaire II, AAQ-II), self-compassion (Self-Compassion Scale, SCS), adjustment to Cancer (Mini-Mental Adjustment To Cancer, MINI-MAC), quality of life (EORTC - QLQ-C30), anxiety and depression (Hospital Anxiety and Depression Scale, HADS).Correlation, linear regression and conditional process analysis was used to explore relationships between predictor variable and psychological outcomes (anxiety, depression, distress, quality of life).
Impact on practice or Results: Results: Significant correlations were found among the observed variables. Cognitive fusion, compared to other independent variables (experiential avoidance, coping strategies, Self-Compassion) was a significant predictive factor for anxiety instead of the strongest predictors of depression were avoidant coping and distress. Moreover, the results highlighted the correlation between the level of psychological distress and treatment period. High levels of distress are observed in the pre-surgical period. Finally, higher psychological flexibility significantly contributed to predict lower anxiety, depression at follow-up.
Discussion or Conclusions: Conclusion and clinical implications: Psychological flexibility was a strongest predictor of adjustment to breast cancer and quality of life. Interventions focused to improve the psychological flexibility can prevent and reduce biopsychosocial burden of oncological disease.
496 One-year experience of the e-training Neurographica program for cancer patients, pros and cons
Institute of Psychology of Creativity, Sankt Petersburg, Russian Federation
Background/rationale or Objectives/purpose: Neurografica is a graphic method of accompany the life changes. It may be used in different fields of human life, including health. One year ago, was developed a special supporting program of Neurographica for women during chemo treatment. The objects was to provide support patients in different part of Russia and to give them the instrument of self-care for improve and hold good quality of life.
Methodology or Methods: Neurographica is an art-therapy approach by P. Piscarev, Russian psychologist. More than 25,000 people in 36 countries are already practicing it. It helps people to express and change their inner state of being by engaging emotional and aesthetic intelligence to find solutions to a variety of problems by means of simple drawing.
Impact on practice or Results: One-year experience shows that Neurographica training may be used online with benefits for patients. The most cancer patients could improve quality of life during one month. They could do it at home without necessity to move out for sessions. There is important enforcement to instructors of Neurographica for successful training, if they work with cancer patients.
Discussion or Conclusions: Neurographica looks very easy and makes an illusion of unconditional success in health-care. In very deed instructor has to understand the specialty of cancer patients’ psycho and online behavior for good result. The training program helps instructors to achieve patients’ quality of life progress.
490 Peer Support Needs of Adolescents and Young Adults with Cancer and Preferences for a Digital Peer Navigation App
Natasha Puri1, Jackie Bender1,2, Karine Chalifour3, Norma D’Agostino1, Emily Drake4,5, Priscilla Estrada6, Sheila Garland7, Abha Gupta8,1, Fuschia Howard9, Sarah Johnson10, Anthony Marrato6, Nikki Leigh McKean6, Laura Mitchell1, Argerie Tsimicalis11
1Princess Margaret Cancer Centre, Toronto, Canada;2University of Toronto, Toronto, Canada;3Young Adult Cancer Canada, St; John's, Canada;4Dalhousie University, Halifax, Canada;5Childhood Cancer Canada, Halifax, Canada;6Patient Partner, Toronto, Canada;7Memorial University, St; John's, Canada;8The Hospital for Sick Children, Toronto, Canada;9University of British Columbia, Vancouver, Canada;10Patient Partner, Gainesville, USA;11McGill University, Montreal, Canada
Background/rationale or Objectives/purpose: Adolescents and young adults (AYAs) with cancer frequently report social isolation, want to connect with peers, and desire support to navigate cancer. Our team of patient partners and researchers investigated the need for, and barriers to peer support, and interest in a peer navigation digital app.
Methodology or Methods: We administered a survey to AYAs diagnosed with cancer at Princess Margaret Cancer Centre (PM), and through social media. Descriptive summary statistics were calculated.
Impact on practice or Results: The sample included 412 AYAs (Mage = 31.24, SD = 6.3); 214 recruited from PM, and 198 from social media. Mean time since diagnosis was 4.08 years (SD = 3.8), and 64% were female. The majority (76%) wanted to connect with other AYAs. Half (50%) talked to a healthcare professional about peer support, and 37% received a referral. However, 55% of PM AYAs did not try to connect with other AYAs, with the inconvenience of in-person peer support programs, and privacy concerns with social media platforms identified as the main barriers. The majority (80%) want a digital app to connect and communicate with a peer, 67% want a trained peer to provide support, and 63% are interested in being a peer navigator. Foremost peer matching characteristics are cancer type, treatments, and age at diagnosis. Most AYAs are seeking information and emotional support from a peer at diagnosis and throughout the cancer journey, and less so practical support or social companionship.
Discussion or Conclusions: There is a need for a peer navigation digital app to connect and facilitate peer support among AYAs with cancer.
485 The Acute Treatment Phase of Cancer as a “Teachable Moment”: User-Centered Design and Usability Testing of the ‘I-Can Manage’ Online Self-Management Program
Doris Howell1,2, Jonathan Avery1, Denise Bryant-Lukosius3, Vishel Kukreti1, Lesley Moody4, Kristen Hasse5, Saeed Moradian1, Mike Lovas6, Athina Santiguida7, Samantha Mayo2
1Princess Margaret Cancer Centre, Toronto, Canada;2University of Toronto, Toronto, Canada;3Juravinski Cancer Centre, Hamilton, Canada;4Cancer Care Ontario, Toronto, Canada;5University of Saskatchewan, Saskatoon, Canada;6University Health Network, Toronto, Canada;7University Health Network, Toronto, Canada
Background/rationale or Objectives/purpose: Cancer lags in the routine provision of self-management support (SMS) leaving patients vulnerable to worse health outcomes. SMS delivered online to capitalize on the acute phase of cancer as a “teachable moment” has potential to alter the clinical course of cancer. This presentation will describe the co-design process, features/functions, and usability testing of the online ‘I Can Manage: Cancer Self-Management Program’ that focused on building self-management skills and strategies to address the acute effects of cancer treatment.
Methodology or Methods: We used a four-step user-centered, co-design process including qualitative interview data (n = 14), journey mapping with patient partners (n = 15), and usability testingin mixed-cancer populations (lung, lymphoma, breast, colorectal) (n = 8), and user testing to design the online self-management program. The features and functions of the program were designed based on Bandura's Self-Efficacy Theory and emphasized building core self-management skills (i.e. goal setting and action planning) and behaviours to manage the acute effects of cancer treatment.
Impact on practice or Results: Patients described a need for the online program to “normalize” their experience of cancer treatment and the “actions” they could take to “minimize” the acute effects of treatment. Think aloud data from usability testing revealed a need to consider the acute effects of treatment (i.e. neuropathy) in the online program design in addition to functions that could support application of core self-management skills and problem-specific behaviours.
Discussion or Conclusions: Patients require SMS to manage the complex medical, psychosocial, and lifestyle changes in the acute phase of cancer. Early support could facilitate better adjustment and improve health outcomes.
461 Distance Art Therapy Groups for Young Adults with Cancer
BC Cancer, Vancouver, Canada
Background/rationale or Objectives/purpose: Young adults with cancer (YAs) have unique needs, and therefore require specialized support. BC Cancer launched its first support group for YA's in 2011: an in person, art therapy group. In 2012,we began developing methods for supporting patients from a distance. First, the website CancerChatCanada was used to host art therapy groups online. In 2018, the author piloted using Skype for Business (SfB) to host an art therapy session. In April 2019, the first Distance Art Therapy Group (DATYA) took place.
Methodology or Methods: The group met using Skype for Business (SfB) for four weeks in April. The art therapist was located in Vancouver, and group members joined from their homes. Each week, participants were given an art therapy exercise to complete on their own time, with their own materials. During the Skype session, participants shared experiences, resources and their artwork. During one session the group was also led through a drawing exercise.
Impact on practice or Results: The results of this pilot group are still being gathered.There were three participants, all of whom were located outside of Vancouver and grateful to be able to access support from their own home. Results will be compiled soon and another DATYA group will run in the Summer or early Fall of 2019.
Discussion or Conclusions: YA's are a population with great need for support and connection. In person and online groups have proven to be successful platforms for them to connect. We expect the DATYA group to provide another effective opportunity for YA's to access this valuable support service.
403 Is therapist support needed in Online interventions to reduce Fear of Cancer Recurrence?
Marije van der Lee1, Sanne van Helmondt1, Rosalie van Woezik1, Jolanda de Vries2
1Helen Dowling Institute, for onco-psychology, Bilthoven, Netherlands;2Center of Research on Psychology in Somatic diseases (CoRPS), Department of Medical and Clinical Psychology, Tilburg University, Tilburg, Netherlands
Background/rationale or Objectives/purpose: We need easy-accessible interventions to help patients that suffer from Fear of Cancer Recurrence (FCR). We will present insights about the usefulness of both guided and unguided online interventions that aim to reduce FCR.
Methodology or Methods: In the CAREST trial (a consecutive cohort of 262 curatively treated breast cancer patients), participants were randomly allocated to a CBT-based self-help intervention or treatment as usual (TAU). We tracked login times and responses of the self-help training and semi-structured interviews were conducted. In the BEMIND trial we included 245 distressed (≥ 11 on the Hospital Anxiety and Depression Scale (HADS) cancer patients. In both trials outcome (Fear of Cancer Inventory (FCRI-NL severity subscale) was analyzed using Linear Mixed Modeling on the intention-to-treat sample.
Impact on practice or Results: User data indicated 87 patients logged in at least once and completed an average of 2 modules of the total 3 basic modules and 4 optional modules of the unguided intervention. Coping style and positive expectations predicted CAREST program usage. Qualitative results showed patients perceived benefit from the program but missed personal guidance. Compared to TAU (T0: M 21.13, SE .83; T1: M 20.14, SE .83) the guided eMBCT program (BEMIND) significantly reduced FCR (T0: M 21.20, SE .61; T1: M 17.43, SE .74; d = .53). Less FCR was a working mechanism for less distress at follow-up.
Discussion or Conclusions: Including more support in online self-help may increase adherence and consequently benefit for patients. Guided eMBCT is a helpful intervention in reducing FCR in distressed cancer patients.
393 Systematic self-screening of insomnia and proposition of a Video-Based Cognitive Behavioral Therapy for Insomnia in French adult cancer outpatients: quantitative and qualitative results of the SLEEP-4-ALL-1 pilot study
Diane Boinon1,2, Cécile Charles1,2, Léonor Fasse1,2, Gloria Pallubicki1, Jonathan Journiac2, Grégory Ninot3, Estelle Ninot3, Sébastien Gouy1, Josée Savard4,5, Sarah Dauchy1,6
1Gustave Roussy, Villejuif, France;2Paris Descartes, Boulogne-Billancourt, France;3Institut Régional du Cancer de Montpellier, Montpellier, France;4École de psychologie, Université Laval, Québec, Canada;5Centre de recherche sur le cancer de l’Université Laval, Québec, Canada;6Université Paris Saclay, Paris, France
Background/rationale or Objectives/purpose: Insomnia is still poorly addressed in cancer care despite its high prevalence. Online self-administered interventions may improve access to health care. A Video-based Cognitive Behavioral Therapy for Insomnia (VCBT-I) has already been shown to be efficacious in breast cancer survivors. Its applicability has never been tested in other cancer populations.
Objectives: Assess: (1) the feasibility of a systematic self-screening of insomnia, (2) the acceptability of the systematic proposal of the VCBT-I program, and (3) the perceived benefits.
Methodology or Methods: Methods: A mixed longitudinal method approach was used (Insomnia Severity Index, Edmonton Symptom Assessment System, Treatment Perception Questionnaire and semi-structured interviews).
Impact on practice or Results: Results: Within 2 months, 177 patients were included: 54.1% were women; 62.2% were in treatment; 34.9%, 22.7%, 22.7%, 19.8% had breast, colorectal, urological or pulmonary cancer respectively. Preliminary results confirm (1) the feasibility of the self-screening (n = 177/199, 89%); (2) the acceptability of the VCBT-I: 80% of patients with insomnia (n = 79/99) accept to participate to this program; (3) The VCBT-I is regarded as an attractive, simple device, accessible to everyone in first qualitative feedbacks (n = 10). Numerous benefits are described (increased knowledge about sleep, stimulus control, implementation of recommendations). Despite a persistent insomnia, some patients describe a new relationship with this symptom (modifying dysfunctional thoughts and attitudes about sleep, putting their sleep problem into perspective) and don’t ask for additional help.
Discussion or Conclusions: Discussion: These first results are encouraging and arise several questions about the best way to support patients during and after this intervention and the best evaluation outcomes (Insomnia Severity Index score versus subjective perception of insomnia).
384 LIVE: Patient-Reported Outcome Feedback and a Web-Based Self-Management Intervention on Psychological Distress, Self-Management Skills, and Satisfaction with Information Provision - Results of Randomized Controlled Trial
Lindy Arts1, Simone Oerlemans1, Lidwine Tick2, Ward Posthuma3, Mels Hoogendoorn4, Rene van der Griend5, Arnate Sanders6, Lonneke van de Poll-Franse1,7
1Netherlands Comprehensive Cancer Organisation, Utrecht, Netherlands;2Máxima Medical Center, Veldhoven, Netherlands;3Reinier de Graaf Hospital, Delft, Netherlands;4Medical Center Leeuwarden, Leeuwarden, Netherlands;5Diakonessenhuis, Utrecht, Netherlands;6Bernhoven Hospital, Uden, Netherlands;7Netherlands Cancer Institute, Amsterdam, Netherlands
Background/rationale or Objectives/purpose: The objective of the Lymphoma InterVEntion (LIVE) trial is to examine whether feedback to patients on their patient-reported outcomes (PROs) and access to a web-based self-management intervention will increase self-management skills and satisfaction with information, while reducing psychological distress.
Methodology or Methods: The RCT consisted of three arms: (1) standard care, (2) PRO feedback, and (3) PRO feedback plus the Living with lymphoma self-management intervention. Patients diagnosed with lymphoma were selected for participation and invited via their haemato-oncologist 6–18 months after diagnosis. The PRO feedback includes a graphical overview of patients’ symptom and functioning scores and an option to compare their scores with other patients with lymphoma and an age- and sex-matched normative population. The Living with lymphoma intervention is based on cognitive behavioral therapy and includes information, assignments, assessments, and videos. Primary outcomes were changes in self-management skills (HeiQ), satisfaction with information (ISQ), and psychological distress (HADS), assessed at baseline (T0) and after 4 months (T1). Statistical (analysis of covariance) and clinical effects (reliable change index) will be tested in an intention-to-treat analysis (T0 and T1).
Impact on practice or Results: 226 patients were randomized and completed baseline questionnaires. Currently, the response rate for T1 is approximately 80%. Data collection of T1 will be complete in May 2019 and trial results will be first presented at the IPOS conference.
Discussion or Conclusions: When effective, PRO feedback and Living with lymphoma could serve as easily and widely accessible interventions for coping with lymphoma.
369 The trade-off between privacy and community in an online lifestyle group intervention for breast cancer survivors
Dana Male1,2, Karen Fergus3,2, Shira Yufe2
1Tom Baker Cancer Centre, Calgary, Canada;2York University, Toronto, Canada;3Sunnybrook Health Sciences Centre, Toronto, Canada
Background/rationale or Objectives/purpose: Obesity amongst breast cancer survivors (BCSs) is a risk factor for recurrence and other illnesses, and can negatively impact psychosocial functioning. Services aimed at helping BCSs maintain a healthier weight and lifestyle are needed. Given the increasing evidence in support of Internet-delivered health care, this Healthy Lifestyle Modification after Breast Cancer (HLM-ABC) intervention was delivered via an online, group-based learning platform.
Methodology or Methods: The HLM-ABC intervention is a 10-week psychoeducational group program aimed at helping BCSs develop a healthier lifestyle through modification of behavioural, cognitive, emotional, and physiological habits. Group members log in to the secure website to view a weekly video, complete homework assignments, and post on the interactive discussion board. This study involved a thematic analysis of post-treatment feedback from the 14 participants who completed the pilot HLM-ABC intervention.
Impact on practice or Results: Findings suggest that the inclusion of precautionary measures intended to protect participant privacy and offset potential harm in an online, asynchronous psychoeducational group (e.g., exclusion of last names, omission of visual or personal identifiers) inadvertently detracted from optimal sharing and sense of community.
Discussion or Conclusions: eHealth interventions are tremendously valuable resources, especially for increasing access to care; however, they also pose unique challenges to the privacy and confidentiality of those using them and to clinicians’ ability to mitigate potential harm. This study emphasizes the need for careful consideration and management of the risks, benefits, and limits of online group services. Findings reveal promising strategies for balancing competing principles of protection of privacy, responsible caring, and group member personal disclosure.
350 Addressing women's knowledge of breast cancer genetic risk: A pilot study of perceptions regarding an innovative web-based platform
Saima Ahmed1,2, Emmanuelle Lévesque3, Michael Doval4,5, Bartha Knoppers3, Carmen G. Loiselle1,2
1McGill University, Montreal, Canada;2Segal Cancer Centre (Jewish General Hospital), Montreal, Canada;3McGill University Centre of Genomics and Policy, Montreal, Canada;4Université Laval, Québec City, Canada;5CHU de Québec-Université Laval Research Centre, Québec City, Canada
Background/rationale or Objectives/purpose: With the availability of new genetic tests for breast cancer risk, a preliminary interactive web platform was developed, and pilot tested among women in the general population to gain insights into perceptions of its content and features.
Methodology or Methods: Women (N = 30) aged 30 to 60, with no history of cancer, were recruited through community settings and randomly assigned to hypothetical risk levels: near population, intermediate or high. Upon viewing the content accordingly, interest in the platform was rated on a questionnaire. A subsample (n = 18) also participated in follow up semi-structured interviews. They were asked for their impressions, as well as recommendations for improvement on the information, features, and visuals
Impact on practice or Results: Platform sections were rated for interest with “Understanding your risk” being the highest (96.3%), followed by “screening and follow-up” (92.6%), and “lifestyle” (92.6%). Satisfaction was high for risk-related information in terms of being “just the right amount”; easy to understand, useful and well-researched and not overwhelming. Visuals received the most feedback for improvement wanting larger text, more colours, less photos and more videos.
Discussion or Conclusions: The PREVENTION platform seeks to support processes of risk identification, screening and prevention of breast cancer by meeting the information needs of women in the general population. Revisions of content and refinement of visuals may further increase engagement. Next steps include further testing in larger samples of women. Once implemented, PREVENTION has the potential to support an ever- growing segment of the population that uses genetic testing to assess their breast cancer risk.
333 Patient and clinician perspectives of self-management needs in the acute phase of cancer: Development of the ‘I Can Manage Cancer’ self-management intervention
Kristen Haase1, Jonathon Avery2, Monika Krzyzanowska3, Denise Bryan-Lukosious4, Lorraine Martelli5, Doris Howell2
1University of Saskatchewan, Saskatoon, Canada;2Princess Margaret Hospital, Toronto, Canada;3University Health Network, Toronto, Canada;4McMaster University, Hamilton, Canada;5Cancer Care Ontario, Dundas, Canada
Background/rationale or Objectives/purpose: Cancer is a physically and emotionally overwhelming experience. Patients benefit from self-management (SM) support, but report limitations in the type and amount of SM support they receive from healthcare professionals in the acute treatment phase of cancer. To intervene in this critical period, our team is developing a web-based self-management system, called I Can Manage Cancer (ICMC). The purpose of this presentation is to report patient and clinician perspectives on self-management needs in the diagnosis and treatment period, and desired features and functions of SM support to guide the development of ICMC.
Methodology or Methods: Employing user-centered design, we used descriptive qualitative methods, conducting interviews with people diagnosed with cancer (n = 16) and focus groups (n = 3) with cancer clinicians (n = 19). Data were thematically analyzed using NVivo qualitative software.
Impact on practice or Results: Our findings make evident the need for SM support with recurring themes related to SM and support, including: (1) uncertainty, fear, and lack of control; (2) looking inward/outward for support and strength; (3) system gaps; and (4) solutions to control and normalize the situation. We also explored desired features, functions, and content of ICMC to address these needs, identifying: user-friendly; connected (but private); and evidence-based digestible and trustworthy health information, as key themes.
Discussion or Conclusions: Our findings recognize gaps in SM identified by patients and clinicians and articulate the features and functions of SM important to people with cancer and their clinicians. Significant overlap between patient and clinician perspectives regarding both content and functions bodes well for future implementation and uptake in clinical settings.
331 Virtual reality for relaxation: tailoring digital experiences on breast cancer patients
Silvia Francesca Maria Pizzoli1,2, Stefano Triberti1,2, Dario Monzani1,2, Ketti Mazzocco1,2, Emanuela Kufel3, Marta Porebiak4, Gabriella Pravettoni1,2
1European Institute of Oncology IRCCS, Milan, Italy;2University of Milan, Milan, Italy;3Prosoma, Wroclaw, Poland;4SWPS University of Social Sciences and Humanities, Warsaw, Poland
Background/rationale or Objectives/purpose: Cancer patients and survivors face physical and psychological challenges related to side effects of treatment (e.g., body image distortions, stress, and struggle to adopt a healthy lifestyle). Virtual reality (VR) is currently used to deliver immersive relaxation training; however, generic virtual environments for relaxation are used (i.e., calm natural scenarios with audio narratives such as breath control guidance), and design guidelines tailored on cancer patients are lacking. By adopting a user centred design approach, we aim to gather patients’ reports on relaxation and relate them to the VR experience to orient future VR design.
Methodology or Methods: 16 breast cancer survivors were interviewed after completing a VR relaxation session. Patients were asked 1) to imagine describing their VR experience to a relevant person, and 2) to describe past effective relaxing experiences, comparing them with the VR experience. Thematic analysis was conducted on reports.
Impact on practice or Results: reports described perceptual features mostly focused on body sensations and awareness, the most frequent being warm temperature (related to voice, colours, body temperature). The modality patients perceived as inducing relaxation the most was hearing (music, water sounds and guiding voice), rather than sight.
Discussion or Conclusions: body-focused exercises (e.g., inducing warmth and weight sensations) should be preferred to breathing and cognitive ones in targeting cancer patients’ relaxation with the VR. Results also stress the importance of tailoring hearing stimuli rather that visual scenarios on cancer patients needs, in particular in building narratives to guide patients in gradually and safely perceiving their own body.
319 The eLIFT educational video platform: a resource to improve prostate cancer information availability and patient knowledge
Jennifer Goulart1,2, Kristin Tangen-Steffins1, Isabella Ghement3, Khalil Hetou4,5, Nelson Leong6,7, Carlson Kevin8, Joseph Chin4,5
1BC Cancer Victoria, Victoria, Canada;2University of British Columbia, Vancouver, Canada;3Ghement Statistical Consulting Company Ltd, Vancouver, Canada;4London Health Sciences Center, London, Canada;5University of Western Ontario, London, Canada;6Allan Blair Cancer Center, Regina, Canada;7University of Saskatchewan, Regina, Canada;8University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: There is an absence of validated resources for prostate cancer survivors. With the support of Prostate Cancer Canada, we have developed the electronic Library for Improved Function (urinary and bowel) post Treatment (TrueNTH-PCC-eLIFT). This consists of a comprehensive English and French online educational video library of urinary and bowel side effects and their management.
Methodology or Methods: We conducted a prospective cohort study comparing outcomes for patients who were given access to eLIFT (N = 23) or standard of care (SOC) (N = 44) after undergoing curative-intent local treatment (prostatectomy, external beam radiation, brachytherapy). The relative impact of eLIFT versus SOC was assessed at baseline and 26 weeks.
Impact on practice or Results: After adjustment for propensity score and curative treatment, eLIFT patients in our cohort were observed to be more likely to search for active information than SOC patients at baseline (OR = 1.26; 95% CI: 0.17 to 9.53) but less likely to do so at 26 weeks (OR = 0.81; 95% CI: 0.12 to 5.40). At both time points, the mean total knowledge score of side effects was observed to be higher by 0.9 points in the eLIFT cohort (one-sided 95% CI: 0.1 to ∞).
Discussion or Conclusions: Less active search at 26 weeks in the eLIFT cohort may imply more satisfaction with the videos and information they received compared to SOC. Patient's knowledge of treatment side effects improved in the eLIFT cohort compared to SOC. eLIFT is a good medium for knowledge transfer and patient empowerment. We aim to integrate this resource into clinical practice across Canada.
297 Pilot Evaluation of a Web-based Peer Navigation Program for Prostate Cancer: Impact and Perspectives of Patients, Caregivers and Peer Navigators
Jacqueline Bender1,2, Parminder Flora1, Shimae Soheilipour3, Nandini Maharaj3, Mihaela Dirlea1, Cheryl Pritlove4, Elizabeth Milosevic1, Bandna Dhaliwal2, Andrew Matthew1, Charles Catton1, Winkle Kwan5, Arminee Kazanjian3
1Princess Margaret Cancer Centre, Toronto, Canada;2University of Toronto, Toronto, Canada;3University of British Columbia, Vancouver, Canada;4St; Michael's Hospital, Toronto, Canada;5BC Cancer Agency, Vancouver, Canada
Background/rationale or Objectives/purpose: Purpose: To evaluate the feasibility, acceptability and potential effects of a web-based peer navigation program for prostate cancer patients and family caregivers.
Methodology or Methods: Methods: We conducted a sequential, mixed-methods study of the TrueNTH Peer Navigation Program at two urban cancer centres in Canada. Prostate cancer patients or family caregivers (participants) were matched online with a trained peer navigator (PN) who provided tailored support.
Impact on practice or Results: Results: Fifty-one participants (66.5%) were matched with one of 20 PNs. Of these, 34 participants (66.5%) completed pre/post questionnaires and 20 were interviewed. All PNs completed pre/post questionnaires and 18 participated in focus groups. Participant satisfaction (M = 8.5/10, SD = 2.1) and PN satisfaction (M = 8.1/10, SD = 1.15) was high. Participants reported significant increases in pre/post scores for prostate cancer quality of life (t(27) = 5.6, p
Discussion or Conclusions: Conclusions: A web-based peer navigation program for prostate cancer patients and family caregivers is highly acceptable and associated with improvements in quality of life, perceived support and patient activation.
275 A logic model method for e-Health intervention planning for a cancer stigma reduction communication program in the general population
Miyako Tsuchiya1, Keiichiro Adachi2, Akiko Kimata1, Risako Fujita1, Kaori Kumagai3, Nami Kondo4
1Division of Cancer Survivorship Research, Center for Cancer Control and Information Services, National Cancer Center, Tokyo, Japan;2Faculty of Health Sciences, Yamaguchi University Graduate School of Medicine, Ube, Japan;3School of Nursing and Social Service, Health Sciences University of Hokkaido, Ishikari-gun, Japan;4Department of Breast Oncology, Saitama Medical University International Medical Center, Hidaka, Japan
Background/rationale or Objectives/purpose: To reduce cancer stigma and improve communication with people with cancer, an e-Health communication program targeting the general Japanese population was developed using a logic model to plan the intervention.
Methodology or Methods: We used literature reviews, two surveys, and evaluation assessments. We searched the Cochrane database of systematic reviews to identify evidence with medium effect sizes on types and components of interventions. We surveyed cancer survivors and people without any history of cancer to determine the content of the program. The results of these three studies were synthesized, and a logic model developed to show how interventions lead to short- and long-term outcomes and effects. To ensure the program quality and delivery were appropriate, feedback on the model was sought from external experts, using questionnaires.
Impact on practice or Results: The Cochrane reviews showed that computer interventions, including multiple components within one media type and first-person narratives, were effective ways to reduce prejudice. The surveys showed that medical information and advice on how to interact with friends with cancer would improve communication and relationships. A multiple component e-Health program was developed with linkages between the intervention and outcomes underpinned by psychological theories in a logic model. Feedback from external experts was relatively good, and helped us to revise inappropriate terminology and implicit descriptions of components.
Discussion or Conclusions: A logic model is useful to synthesize evidence and hypothesize the pathways for complex interventions. This method may help with intervention planning of clinical studies.
271 Implementation and Evaluation of Patient and Caregiver Reported Outcomes to Improve Real Time Symptom Management in Cancer Care Across Quebec with Mobile Technology: The e-IMPAQc Project
Zeev Rosberger1,2,3,4, Sylvie Lambert5,6, John Kildea7,1,8, Rosana Faria9,1, Tarek Hijal10,8,1, Laurie Hendren8,11, Jane McCusker12,6, Mona Magalhaes6
1Department of Oncology, McGill University, Montreal, Canada;2Department of Psychology, McGill University, Montreal, Canada;3Department of Psychiatry, McGill University, Montreal, Canada;4Lady Davis Institute, Jewish General Hospital, Montreal, Canada;5Ingram School of Nursing, McGill University, Montreal, Canada;6St; Mary's Research Centre, Montreal, Canada;7Medical Physics Unit, McGill University, Montreal, Canada;8Cancer Research Program, Research Institute of the McGill University Health Centre, Montreal, Canada;9St; Mary's Hospital Center, Montreal, Canada;10Division of Radiation Oncology, McGill University Health Centre, Montreal, Canada;11School of Computer Science, McGill University, Montreal, Canada;12Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, Canada
Background/rationale or Objectives/purpose: Based on previous findings, we found that Patient-Reported Outcomes (PROs) completed by oncology patients electronically at point of care was acceptable and provided immediate, focused discussions with clinicians regarding symptom management. The aim of e-IMPAQc is to implement and evaluate the effect of the systematic electronic assessment of PROs and Caregiver Reported Outcomes (CROs) on patient and caregiver outcomes using a mobile application to integrate PROs data into the electronic health record.
Methodology or Methods: Six cancer centres in Quebec will participate in the initial pilot project. We will phase in an implementation that includes: education of clinicians regarding management of PROs (and CROs), mapping of care pathways for each PRO based on evidence-based cut-off scores, and a stepped-care approach (including provision of patient self-management resources). The ESAS-r (plus additional physical symptoms), Distress Thermometer and Canadian Problem Checklist will be used as initial screening tools with cut-off scores triggering secondary PROs initially for anxiety, depression, pain and fatigue. Feedback summary reports will be developed for each cancer centre to provide clinicians at point of care for discussion of actionable items. Each phase will be evaluated using a mixed methods approach.
Impact on practice or Results: Early identification of problem symptoms will lead to improved communication between clinicians, patients and care-givers, and timely, focused interventions (including self-management) to address symptoms expediently, improve quality of life, and provide lessons for roll-out across the province.
Discussion or Conclusions: The implementation of e-IMPAQc is in collaboration with Quebec Ministry of Health and aligned with current distress and symptom screening and management guidelines.
237 “Apps, Apps, and more Apps: A review of Apps use in Cancer Patient Care?”
Laurie Freeman, Sheena Gagnier, Sheila Boamah
University of Windsor, Windsor, Canada
Background/rationale or Objectives/purpose: Objective: Self-help or medical mobile applications (apps) are being developed and deployed daily with use growing exponentially to promote health and wellbeing worldwide. However, little evidence exists on effectiveness or usefulness among oncology patients during treatment. A scoping review was conducted primarily to examine the state of science around usefulness of mobile applications in oncology patients during treatment. A secondary goal was to assess apps for any built in psychosocial components for patient use.
Methodology or Methods: Methods: Three authors independently searched and reviewed peer-reviewed articles at the title and abstract level. All authors collectively reviewed articles at the abstract and full-manuscript level. Four databases were searched using a variety of search terms. Inclusion criteria were: published in English, between 2014 to 2018, adult oncology patients undergoing treatment, mobile application use during treatment, and psychosocial components within the apps used. A scoping review approach was taken and thematic data around usefulness was extracted and summarized.
Impact on practice or Results: Results: The combined searches identified a total of 21 articles for review. Findings suggest that mobile applications may be useful for oncology patients undergoing treatment. Some had psychosocial components for use, by patients, but not all. The majority of studies had poor generalizability and described newly developed applications that are not readily accessible across the globe.
Discussion or Conclusions: Mobile applications have the potential to transform the care and management of oncology patients during treatment. Unfortunately, how to effectively use apps clinically remains uncertain. Therefore, researchers should consider new or replicating studies with available applications to assess usefulness in North America.
225 Examining Relationships Between mHealth Use and Cancer Prevention Beliefs Within the U.S. Population: Results from the 2017 and 2018 National Cancer Institute Health Information National Trends Survey (HINTS)
Camella Rising, April Oh
National Cancer Institute, Division of Cancer Control and Population Sciences, Behavioral Research Program, Health Communication and Informatics Research Branch, Rockville, USA
Background/rationale or Objectives/purpose: Based on the Common-Sense Model of Self-Regulation, mhealth may facilitate adoption of cancer risk-reducing behaviors by helping individuals create action plans and receive feedback on action plan efficacy to prevent cancer. Perceptions about cancer preventability may influence these action plans and resultant behaviors. We aimed to examine a hypothesized association between mhealth use and higher perceived cancer preventability among a nationally representative sample of the U.S. population.
Methodology or Methods: NCI HINTS data was used to categorize respondents (N = 6,789) as mhealth users (n = 3,517) or nonusers (n = 1,832). Inclusion criteria for users included: having health apps on a smartphone/tablet and/or using apps to track health goals and/or using other devices to track health; nonusers reported none of these mhealth usage patterns. Perceived preventability was measured by one item: “There's not much you can do to lower your chances of getting cancer.” Data were weighted and regression analyses conducted in SAS.
Impact on practice or Results: Compared to mhealth users, nonusers were more likely to be pessimistic about cancer preventability (OR = 1.44, CI = 1.13, 1.82, p = .003). However, after sociodemographic and health-related covariates were included in the model, the relationship was nonsignificant. Instead, non-white race, lower education, overweight/obesity, and not being a cancer information seeker were significantly associated with lower perceived preventability.
Discussion or Conclusions: Findings suggest perceived preventability is more strongly related to sociodemographic and health-related factors than mhealth use. Clinicians could consider that patients may not perceive their mhealth tracking as cancer preventive. However, since relatively more people are users, mhealth remains a potential tool for reach in cancer prevention.
223 Creating awareness regarding social consequences of advanced cancer and enhancing support skills in health care professionals: a pilot study
Janneke van Roij1,2, Linda Brom1, Lonneke van de Poll-Franse1,2,3, Natasja Raijmakers1
1The Netherlands Comprehensive Cancer Organisation, Utrecht, Netherlands;2Tilburg University, Tilburg, Netherlands;3The Netherlands Cancer Institute, Amsterdam, Netherlands
Background/rationale or Objectives/purpose: Social isolation is common for patients with advanced cancer. Social support can protect patients from feeling isolated and increase their psychological wellbeing. Especially in advanced cancer patients, healthcare professionals become an important source of social support. However, healthcare professionals are often primarily focussed on the patients’ physical condition. A workshop was developed to create awareness in nurses regarding the social consequences of advanced cancer and enhance their support skills. The aims of this pilot study is to evaluate the feasibility and effectiveness of the workshop.
Methodology or Methods: A workshop with an experienced learning approach was developed. The workshop consisted of a patient story explaining the issue followed by a VR experience, a theoretical part including discussions, and role play sessions. Questionnaires regarding awareness, knowledge, and support skills were administered before and after the workshop. Nurses were asked to participate in our workshop between October 2018 and February 2019.
Impact on practice or Results: In total four workshops were organised with 6–10 participants in each session. In general, the workshop was positively rated by the participants. Especially the VR experience and roleplay received positive responses. The workshop increased the level of awareness and facilitated reflection in participants on their professional skills.
Discussion or Conclusions: The pilot study shows that the workshop has the potential to increase the level of awareness and support skills in nurses regarding social consequences of advanced cancer. Technical issues in the VR experience should receive attention to optimise effects. Further research is necessary to determine in which subpopulations the intervention is most suitable.
219 Development of an intervention to promote physical activity in cancer survivors using a publicly available smartphone app
Anna Roberts1, Henry Potts1, Phillippa Lally1, Lee Smith2, Abi Fisher1
1University College London, London, United Kingdom;2Anglia Ruskin University, Cambridge, United Kingdom
Background/rationale or Objectives/purpose: Physical activity (PA) ameliorates many consequences of cancer treatment (e.g. fatigue, quality-of-life). We used mixed-methods with the aim of developing an intervention using a smartphone app to promote PA in breast, prostate and colorectal cancer survivors in the UK.
Methodology or Methods: A systematic review and meta-analysis synthesised available evidence for the effect of digital interventions on PA in cancer survivors (Study 1). Study 2 assessed interest in digital interventions in 5,840 cancer survivors and explored associated participant characteristics. Qualitative interviews sought cancer survivors’ experiences of using selected publicly available PA apps (Study 3) and cancer Clinical Nurse Specialists (CNSs) perspectives on PA promotion and the role of PA app interventions in cancer care (Study 4).
Impact on practice or Results: Study 1 showed that on average, digital interventions increase cancer survivors’ moderate-vigorous PA by 40 minutes per week. Study 2 found that 24% of cancer survivors report interest in app-based interventions. Interest was related to several sociodemographic and participant characteristics. Study 3 found that PA apps must acknowledge the varying needs and preferences of cancer survivors. Apps that promote walking were favoured and recommendations from CNSs are valued. Study 4 showed that CNSs were positive about the use of apps to complement existing PA promotion in cancer care and provided insight into how app-based PA interventions could be implemented in routine cancer care.
Discussion or Conclusions: Together, these studies led to the development of a randomised controlled trial using a PA app in cancer survivors, which has secured funding and will be the next phase of this research.
108 Cognitive Behavioral Therapy for Insomnia: A Virtual Supportive Care Program to address Symptom Management Needs in Cancer
Yvonne Leung1,2, Lianne Tracthenberg1,2, Sheila Garland3, Jiahui Wong1,2, Mary Jane Esplen1,2
1de Souza Institute, Toronto, Canada;2University of Toronto, Toronto, Canada;3Memorial University of Newfoundland, St John's, Canada
Background/rationale or Objectives/purpose: Insomnia is common and linked to mood disturbance, decreased treatment responses, and worsened quality of life (QoL) in cancer patients. Emerging evidence suggests that Cognitive Behavioral Therapy for Insomnia (CBT-I) is effective for cancer patients. Internet-delivered CBT-I is currently offered by CancerChatCanada (CCC), a national virtual supportive care program, providing therapist-led group support to Canadians while increasing healthcare access. The objective of the current study was to assess psychological, physical, and satisfaction outcomes of the CCC participants.
Methodology or Methods: An 8-week internet-delivered CBT-I program was offered between 2017–2018. Participants were required to read a standardized insomnia manual and completed sleep diary before each session. The Intake assessment included demographics, insomnia severity, and participating reasons. Pre-post program evaluations included cancer-related distress (IES-R), QoL (FACT-G), and post-program satisfaction. Descriptive statistics and paired t-tests were conducted.
Impact on practice or Results: Fifty-five patients enrolled and 32 participated. Majority were female (84%), aged between 45–64 years (64%), had breast (40%) or gynecological (25%) cancers, and reported difficulties falling asleep (49%), and/or waking up at night (47%). Reasons for participation were convenience (69%) and comfort (33%). Of those participated, 29 (90%) completed the post-program evaluation; significant improvements in cancer-related distress (t = -2.55, p = 0.018) and QoL (t = 2.23, p
Discussion or Conclusions: Preliminary results show that an Internet-delivered CBT-I can significantly improve psychological distress and functional wellbeing while providing emotional and informational support to cancer patients.
75 Primary skin cancer prevention in the age of smartphones: A review of commercially-available applications for promoting sun protection practices
Chelsea Moran1, Ella Zetler2
1Department of Psychology, University of Calgary, Calgary, Canada;2Faculty of Medicine, McGill University, Montreal, Canada
Background/rationale or Objectives/purpose: Primary prevention of skin cancer is best achieved by protecting the skin from exposure to ultraviolet (UV) radiation. The ubiquity of smartphones makes them the ideal tool to disseminate strategies for skin cancer prevention by helping individuals monitor UV exposure, and providing tailored recommendations and reminders. Dozens of applications of varying quality are currently available for download, making it difficult for interested users to find applications with useful and effective features. The purpose of this study was to provide a comprehensive list of sun protection apps and their quality.
Methodology or Methods: We searched the Apple and Google Play App stores for smartphone apps that promote sun safety, and results were screened by two independent reviewers according to pre-defined criteria. App quality and potential to promote behaviour change were evaluated using two validated instruments: Mobile App Rating Scale, User Version (UMARS; Stoyanov et al.,2015) and the App Behaviour Change Scale (ABACUS; McKay et al.,2019).
Impact on practice or Results: Our search revealed 1,060 results across both app stores (including duplicates), from which we identified 9 eligible apps. Most apps were user-friendly and provided tailored sun protection recommendations based on user skin type. Overall, the quality and potential for behaviour change of individual apps varied widely. All apps were missing tracking and goal-setting features.
Discussion or Conclusions: Currently available apps designed to promote sun protection behaviours are missing key elements theorized to promote behaviour change. Once these features are added, further empirical research is required to establish whether the use of these apps results in a sustained reduction in UV exposure.
679 The importance of supportive care in long-term home-based exercise for prostate cancer patients receiving androgen deprivation therapy
Brigitta R Villumsen1, Britta Hørdam2, Martin Grønbech Jørgensen3
1Urological Department, Regional Hospital Holstebro, Holstebro, Denmark;2University of Copenhagen, Copenhagen, Denmark;3Center for PREdiction and prevention of FALLs (PREFALL), Department of Geriatrics, Aalborg University Hospital, Aalborg, Denmark
Background/rationale or Objectives/purpose: Supportive care in long-term cancer rehabilitation is crucial. This study investigated the importance of regular telephone contact (two times per month) between health care professionals and chemically castrated prostate cancer patients to maintain long-term compliance to home-based exergaming training.
Methodology or Methods: One year after the completion of a randomized trial (n = 41) a questionnaire on exercise routines, exercise motivation, and the importance of regular contact with health care professionals was collected. In addition, data on physical activity level using the Godin Leisure-Time exercise questionnaire was collected.
Impact on practice or Results: The response rate was 88% with 36 returned questionnaires showing that one year post-intervention 38% still practiced exergaming and 33% in the usual care group had increased their physical activity level. Physical activity level was equal in both groups and corresponded to what was seen in the intervention period. 89% found regular telephone contact with health care professionals motivating and 50% found it supportive.
Discussion or Conclusions: The technology in exergaming provides instructions on how to perform exercises, goalsetting and increasing physical activity levels, which are considered cornerstones in exercise adherence. However, cancer patients still need the supportive care of health care professionals to comply with exercise guidelines. Future cost-benefit studies on exercise in the supervised setting versus home-based exergaming with telephone support in cancer populations are warranted.
676 Experiences with a Supervised Exercise Program for Individuals with Breast Cancer
Yvonne Anisimowicz, Ryan Hamilton, Danielle Bouchard, Martin Senechal
University of New Brunswick, Fredericton, Canada
Background/rationale or Objectives/purpose: Purpose: With breast cancer mortality rates decreasing and survivorship lasting longer, the physical and psychosocial challenges associated with the after-effects of cancer treatments are also experienced for longer. This study examined how programs designed to help mitigate these challenges are experienced by those who have finished or are currently in active treatment.
Methodology or Methods: Methods: Individualized exercise programs were developed incorporating aerobic, resistance training, balance, and flexibility exercises. Twice weekly, participants exercised while supervised by a physiotherapist, clinical nurse specialist, and kinesiology students with specific training for this population. Qualitative interviews were conducted post-intervention to investigate participants’ experiences.
Impact on practice or Results: Results: Thematic analysis revealed that most participants reported joining the program in hopes of increasing their energy and strength. They chose this program because it was offered by knowledgeable facilitators who provided instruction and exercise plans tailored to their individual needs. It was also attractive because it was a free, structured program, and many felt that signing up would instill a sense of commitment that would motivate them to complete the program. Benefits of participation included increased energy and strength, and mental and emotional improvements. Obstacles to participation included fatigue and poor health, plus difficulties with scheduling and the costs (time, money) associated with travelling from rural areas.
Discussion or Conclusions: Conclusion and clinical implications: Despite obstacles arising from being in active treatment, many people seek and benefit from an exercise program tailored to their unique needs. These findings may support the inclusion of structured exercise programs as part of the standard model of care for cancer.
638 Device-measured and self-report physical activity assessment among breast cancer survivors: variation according to intensity and time in survivorship
Isabelle Doré1, Catherine Sabiston2
1Université de Montréal, Montréal, Canada;2University of Toronto, Toronto, Canada
Background/rationale or Objectives/purpose: This study examined the concordance between device-measured and self-report light, moderate, and vigorous physical activity (PA) among breast cancer survivors over time.
Methodology or Methods: Data were collected among a sample of women breast cancer survivors (n = 201, mean age = 55.0, SD = 11.0). PA was assessed using both self-reported (Leisure-time Physical Activity Questionnaire) and device (GT3X triaxial accelerometer) measures collected every three months during the first year post-treatment (time 1 to 5) and 2 and 4 years (time 6 and 7) post-cancer treatment. Pearson's correlations between self-reported and objective measures were computed for each PA intensity at each of the seven time points.
Impact on practice or Results: Device-measured and self-report light intensity PA were not statistically significantly correlated at any of the seven time points (r vary from -.02 to .18, all p > .05). Low to moderate correlations were observed between device-measured and self-report moderate intensity PA, and are relatively stable over time (r = .31 to .46, all p.01). Low to moderate correlations between device-measured and self-report vigorous intensity PA were observed and correlations increased over time from r = .11 (p = .13) at time 1 to .62 (p.01) for time 7. For all PA intensities at every time point, self-report PA overestimate device-measured PA.
Discussion or Conclusions: Women overestimate PA, with greatest differences between device-measure and self-report assessments for light PA intensity. Concordance between device-measured and self-report vigorous PA vary over time in survivorship. Use of self-report PA measure among breast cancer survivors might be more appropriate for moderate-to-vigorous PA intensity, especially after one year post-treatment.
637 Move more and sit less: a four-year post treatment study among breast cancer survivors
Isabelle Doré1, Catherine Sabiston2
1Université de Montréal, Montréal, Canada;2University of Toronto, Toronto, Canada
Background/rationale or Objectives/purpose: Despite the recommendations for cancer survivors to engage in physical activity, little is known about the effects of sedentary behaviour on key health symptoms such as depression, pain, and fatigue. Most evidence on lifestyle behaviours focuses on longer-term survivorship rather than early post treatment. Also, lifestyle behaviours are often self-reported. Addressing these limitations, this study prospectively examined the lifestyle behaviours of moderate-to-vigorous physical activity (MVPA) and sedentary time (ST) as predictors of depressive symptoms, pain, and fatigue in breast cancer survivors.
Methodology or Methods: Breast cancer survivors (n = 201, mean(SD) age = 55.0(11.0) years) self-reported depressive symptoms, pain, and fatigue, and wore an accelerometer to measure MVPA and ST every three months during the first year (time 1 to 5) and 2 and 4 years (time 6 and 7) post-cancer treatment. Linear mixed models were adjusted for integral personal (e.g., age, BMI, education, income, marital status) and cancer (e.g., stage, time since treatment) variables.
Impact on practice or Results: MVPA and ST were independent predictors of depressive symptoms, but not fatigue, and only ST was associated with pain over four years post-treatment. Higher levels of MVPA were associated with lower scores of depressive symptoms ((95%CI): -0.062(-0.092, -0.031) ppp = .001).
Discussion or Conclusions: Rehabilitation interventions should aim to both increase physical activity and reduce sedentary behaviours to promote health and well-being among breast cancer survivors, in particular during the early post-treatment period.
624 Exercise and rehabilitative counselling indications: two proactive approaches against physical impairment for pediatric patients undergoing hematopoietc stem cells transplantation
Francesca Rossi1, Carolina Chamorro-Viña2,3, Giulia Zucchetti1, Paola Berchialla4, Maria Esposito1, Monica Coppo5, Elena Vassallo1, Franca Fagioli1
1A.O.U; Città della Salute e della Scienza–Regina Margherita Children Hospital, Turin, Italy;2Kids Cancer Care Foundation of Alberta, Calgary, Canada;3University of Calgary, Faculty of Kinesiology, Calgary, Canada;4Department of Clinical and Biological Sciences, University of Turin, Turin, Italy;5Master degree in Rehabilitation Sciences; School of Medicine, University of Turin, Turin, Italy
Background/rationale or Objectives/purpose: To assess the feasibility and efficacy of an in-patient exercise program (EP) vs rehabilitation counselling indications (RCI), in gross motor functions, quality of life (QoL) and fatigue in children undergoing hematopoietic stem cell transplant (HSCT).
Methodology or Methods: A cluster time section model was used to divide the participants in an exercise (EG) and control group (CG). The EG (n = 11) performed an EP 5/week (aerobic/strength/flexibility) plus received RCI. The CG (n = 19) received RCI. Outcomes: Motor function (GMFM-ALL), QOL and fatigue (PedsQL cancer module and fatigue) were measure at baseline and after discharge (M = 31days). Fisher and non- parametric tests were used to assess differences at descriptive level. Linear regression model was employed to evaluate the effect of counseling on GMFM-ALL.
Impact on practice or Results: Thirty patients Mage = 12.9 ± 3.6 years completed assessments. RCI adherence was 74% for EG and 64% for CG. Participant in CG that adhere to RCI showed less detriment in the gross motor functions compared with the ones that did not follow the counselling (p = 0.006). Overall, 74% of the EG and 64% of CG preserved motor skills between baseline and discharge, without a significant difference. Overall, 11% of EG represented by subjects who didn’t have adherence to the EP and 56% of the CG needed rehabilitation after discharge (p = 0.02). No significant differences were detected in QoL and fatigue.
Discussion or Conclusions: RCI has a positive effect in preserving gross motor functions during the HSCT hospitalization if participant adhere to it. Performed an EP during HSCT seems to decrease the need of rehabilitation after discharge. Both interventions should be consider as standard care.
615 Associations Between Cardiorespiratory Fitness, Physical Activity and Cognitive Function in Patients with Metastatic Renal Cell Carcinoma: A Study Protocol
Linda Trinh1, Jennifer Jones2, Lori Bernstein2, Kim Edelstein2, Catherine Sabiston1, Anil Kapoor3
1University of Toronto, Toronto, Canada;2Princess Margaret Cancer Centre, Toronto, Canada;3McMaster University, Hamilton, Canada
Background/rationale or Objectives/purpose: Metastatic renal cell (mRCC) patients on antiangiogenic therapy (ATT) exhibit cognitive impairments. Cancer-related cognitive dysfunction (CRCD) negatively impacts quality of life. CRCD is largely under recognized and there are no proven treatments beyond symptom management. Physical activity (PA) and cardiorespiratory fitness (CRF) may mitigate CRCD. Therefore, the study objective is to examine the independent role of CRF and PA on cognitive function from baseline (prior to initiation of treatment) to 3 months (after initiation of treatment) in mRCC patients.
Methodology or Methods: Using a prospective cohort design, mRCC patients scheduled to begin ATT (N = 101) from the Princess Margaret Cancer Centre and Juravinski Cancer Centre will be recruited. Objective and subjective measures of cognitive function will be conducted using the NIH Toolbox Cognition Battery and the FACT-Cognitive Scale (FACT-Cog-3), respectively. PA will be assessed by accelerometry (ActiGraph GT3X+). CRF will be assessed using a submaximal graded exercise treadmill test. Demographic and clinical variables will be collected via self-report and chart review. Separate linear regressions will be conducted where CRF and PA levels at baseline will be used to predict change in cognitive function from baseline to month 3.
Impact on practice or Results: in progress
Discussion or Conclusions: The study will be instrumental in designing lifestyle interventions to improve cognitive health in mRCC patients. Understanding the broader trajectory of cognitive function will offer insight into the opportune time to intervene. This pilot data will lead to future PA studies that may have a major impact on clinical management of cognitive function in mRCC patients.
509 Exercise and cancer: Characteristics of the rapidly emerging offer of programs across five countries
Audrey Plante1, Isabelle Doré1,2, Lise Gauvin1,3, Danielle Charpentier4, Lise Pettigrew5, Isabelle Brisson5, Fred Saad6, François Tournoux6, Marie-France Raynault1,3, Marie-Pascale Pomey1
1Centre Hospitalier de l’Université de Montréal Research Centre, Montréal, Canada;2Faculty of Kinesiology & Physical Education, University of Toronto, Toronto, Canada;3School of Public Health, Université de Montréal, Montréal, Canada;4Centre intégré d’oncologie, Centre Hospitalier de l’Université de Montréal, Montréal, Canada;5Fondation Virage, Centre Hospitalier de l’Université de Montréal, Montréal, Canada;6Centre Hospitalier de l’Université de Montréal, Montréal, Canada
Background/rationale or Objectives/purpose: People diagnosed with cancer can safely exercise to improve mental and physical health. Yet, little is known about programs available in different settings. This grey literature review identifies and describes exercise programs for people with cancer available in five countries.
Methodology or Methods: Programs were identified in Canada, Australia, USA, France, and United Kingdom using directories available on national cancer organizations’ websites, articles from the authors’ own libraries, and Google. Information about the setting (hospital, community, private), cost (free, low cost, expensive), type of program (group classes, one-on-one sessions, home training), supervision (trained exercise professionals, instructors), and content (cardiovascular, strength, flexibility) were extracted.
Impact on practice or Results: A total 134 programs were identified: 17% in hospitals, 44% in community settings, and 27% in private settings. Although there were no differences across countries, there were differences between settings for cost, supervision type, program type and program content. Community programs are mostly free or low cost (83%), supervised by instructors (49%), and offer group classes (75%). Hospital programs are also free or low cost (86%), but are supervised by exercise professionals (47%). Most programs in private settings are based on a fee-for-service model (78%) and the vast majority of them are supervised by exercise professionals (70%) and include customizable content (26%) and type (40%).
Discussion or Conclusions: This review indicates that exercise resources are available for people with cancer. However, there is substantial variability in supervision, format, and content across settings. Evidence-based recommendations are required to orient the development and implementation of these programs.
482 Exercise as Medicine for Cancer Patients – the Evolving Role of the Physician
University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: Evidence clearly supports exercise as a crucial component of care throughout the cancer trajectory, positively impacting physical and psychosocial functioning, and overall quality of life. Physicians play a key role in the promotion of exercise, yet many barriers have prevented the integration of exercise counseling into standard practice. Barriers including lack of training, lack of time, and lack of trusted referral source, have prevented many physicians from discussing exercise with their patients. Fortunately, a shift to the prioritization of disease prevention and health promotion in medical education is occurring. This presentation will discuss the role of the physician in assessing and promoting exercise and how novel initiatives in medical education are currently being implemented to help increase exercise and wellness literacy skillsets for the next generation of physicians. The promotion of exercise in a clinical setting will also be discussed, including the role of allied health care and fitness professionals in exercise implementation and maintenance.
Methodology or Methods: This presentation will focus on the evolution of educational initiatives designed to facilitate the physician's role in promoting exercise as part of standard cancer care.
Impact on practice or Results: Discussion will include a review of the current implementation barriers for physicians, and the changes to medical education that will better equip graduating doctors.
Discussion or Conclusions: Education of physicians to better understand the role and impact of exercise for cancer patients, how to assess and proceed with recommendations, and how to refer patients to specialized fitness professionals, will positively shift traditional care pathways, forming a new standard in cancer care practices.
435 Family members’ perceptions of cancer related fatigue and physical activity
Lynn Dunwoody1, Cathy Payne2, Lisa Graham-Wisener3
1Ulster University, Coleraine, United Kingdom;2All Ireland Institute of Hospice and Palliative Care, Dublin, Ireland;3Queen's University, Belfast, United Kingdom
Background/rationale or Objectives/purpose: Physical activity (PA) can improve strength, physical functioning, lead to reductions in cancer related fatigue (CRF) and improve quality of life for those living with and beyond cancer. Family members may have the potential to facilitate or impede engagement with PA, thus the aim of the study was to explore family members’ knowledge and perceptions of CRF and PA.
Methodology or Methods: This was a qualitative study, with data collected from five focus groups. Questions were derived from the literature and refined in conjunction with members of a Personal and Public Involvement group. Discussions were audio recorded, transcribed verbatim and subjected to thematic analysis. The resultant themes were verified by participants.
Impact on practice or Results: Four themes emerged: 1. Family members unmet informational needs surrounding CRF; 2. Perceptions surrounding the duration of CRF; 3. Misconceptions about PA; 4. Uncertainty about PA for CRF and timing of information sharing from healthcare professionals.
Discussion or Conclusions: There was a recognition that CRF was debilitating, but it was mainly perceived as a short-term side effect of treatment or a psychological response to having a diagnosis of cancer. Information is needed to dispel myths surrounding the term PA and its role in helping to manage CRF, but this needs to be provided at an appropriate time during the cancer journey. Limitations of study and directions for future research are noted.
351 The effect of physical exercise on employment status and working hours in cancer survivors after chemotherapy
Saskia Duijts1,2, Caroline Kampshoff3, Goof Schep4, Marten Nijziel5, Willem van Mechelen2, Laurien Buffart6
1University of Groningen, University Medical Center Groningen, Department of General Practice and Elderly Care Medicine, Groningen, Netherlands;2Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health, Amsterdam Public Health research institute, Amsterdam, Netherlands;3Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Medical Oncology, Cancer Center Amsterdam, Amsterdam, Netherlands;4Máxima Medical Center, Department of Sports Medicine, Velthoven, Netherlands;5Catharina Hospital, Department of Hematology, Eindhoven, Netherlands;6Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Epidemiology and Biostatistics, Amsterdam Public Health research institute, Amsterdam, Netherlands
Background/rationale or Objectives/purpose: Cancer survivors often experience difficulties when returning to work. This study evaluated the effectiveness of a supervised aerobic and resistance exercise on employment status and working hours, compared to a waiting list control group (WLC), in cancer survivors after chemotherapy completion.
Methodology or Methods: The study is a secondary data analysis of participants in the Resistance and Endurance exercise After ChemoTherapy (REACT) study, who were of working age (n = 160). They were randomized to an exercise intervention (n = 105) or WLC group (n = 55). Outcomes were changes in employment status, and absolute and relative working hours. Questionnaires were completed at baseline (4–6 weeks after treatment) and post-intervention (12 weeks after randomization). Logistic and linear regression analyses were performed, in which we adjusted for age, gender, BMI and hormonal therapy.
Impact on practice or Results: Compared to 4% of patients in the WLC group, 15% returned to work in the exercise group (OR = 1.9, 95%CI 0.81;4.58), post-intervention. The exercise group showed 6.2 hours increase in absolute working hours, compared to 4.5 hours in the WLC group (β=2.0, 95%CI -1.7;5.7 hours). The increase in relative working hours was 22.7% in the exercise group, compared to 14.3% in the WLC group (β=8.8, 95%CI -3.8;21.4%). However, none of these findings were statistically significant.
Discussion or Conclusions: The observed average increases in the intervention group in the number of participants at work and in working hours may be considered clinically relevant, however they were non-significant. Future studies, designed to evaluate the effect of exercise on work as primary aim, are needed, with exercise as part of a multiple component intervention.
313 Cancer survivors’ perspectives on social challenges with participating in group exercise programs
Sarah Dueck1, Meghan H. McDonough1, S. Nicole Culos-Reed1,2
1Faculty of Kinesiology, University of Calgary, Calgary, Canada;2Department of Oncology, Cumming School of Medicine, University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: The purpose of this study was to describe social challenges experienced by participants in group exercise programs for cancer survivors. Group exercise can improve quality of life, but interacting with other survivors may also present challenges related to interpersonal interactions and comparisons that may affect participation. We specifically examined cancer survivors’ thoughts and emotions regarding participation in group exercise programs for cancer survivors.
Methodology or Methods: Interpretive description methodology guided design and analysis. Cancer survivors (n = 5, 1 male, 4 female; age 46 - 68 years), were purposively sampled from group exercise programs for cancer survivors. Participants completed semi-structured interviews, and themes representing challenging social experiences faced were identified inductively.
Impact on practice or Results: Challenging social experiences described by participants included a lack of social support in the group, identifying with other cancer survivors’ struggles, and comparing themselves with others in terms of their physical ability or experience with cancer. However, participants also identified that the common experience of cancer with others in the group created a safe space, and seeing others succeed was inspiring and increased effort put into the exercises.
Discussion or Conclusions: Cancer survivors face several social challenges and forms of support that may affect their emotions, interactions with others, and participation in an exercise group. Results have the potential to inform future research and development of practical recommendations to help survivors cope with social challenges and access support in exercise programs with other cancer survivors.
295 Affective Response to High-Intensity Interval Training and Moderate-Intensity Continuous Exercise in Overweight and Obese Gynecologic Cancer Survivors
Allyson Tabaczynski1, Catherine M. Sabiston1, Daniel Santa Mina1, Steven J. Petruzzello2, Linda Trinh1
1Faculty of Kinesiology and Physical Education, University of Toronto, Toronto, Canada;2Department of Kinesiology and Community Health, University of Illinois at Urbana-Champaign, Urbana, USA
Background/rationale or Objectives/purpose: Gynecologic cancer survivors (GCS) often have poor cardiorespiratory fitness (CRF) which may increase their risk of negative health- and cancer-related outcomes. High-intensity interval training (HIIT) is effective in rapidly producing positive physiological adaptations, including improved CRF, fatigue and quality of life in people with cancer. Compared to moderate-intensity continuous training (MICT), affective response to HIIT has received little attention in cancer survivors despite its practical implications for future exercise participation. The purpose of this study is to compare affective response during (i.e., in-task) and following (i.e., post-task) a single bout of HIIT and MICT in overweight and obese GCS. Secondary outcomes include comparing enjoyment, task self-efficacy, intentions and exercise preferences following HIIT and MICT.
Methodology or Methods: Following a baseline maximal graded exercise test, 44 GCS participants will perform acute, 20-minute bouts of HIIT and MICT on separate occasions in a randomized and counterbalanced order. The HIIT session will consist of 10, 60-second intervals at 125% of participants’ ventilatory threshold (VT), interspersed with active rest (75% of VT). MICT will be performed at 90% of participants’ VT. Affective response will be assessed pre-, during, and post-exercise using the Feeling Scale, Felt Arousal Scale and Activation Deactivation Adjective Checklist. Enjoyment, task self-efficacy, intentions and exercise preferences will be assessed post-exercise.
Impact on practice or Results: Data collection is in progress.
Discussion or Conclusions: Results from this study, will provide further understanding of the psychological responses unique to HIIT and MICT. This study may inform future interventions to which exercise protocols may optimize adherence and potentially increase exercise participation in GCS.
266 Levels of fitness and physical activity among myeloma survivors: exploring impact on fatigue and quality of life in survivorship
Orla McCourt1,2, Joanne Sowter2, Abigail Fisher2, Malgorzata Heinrich2, Rebecca Beeken2,3, Allan Hackshaw2, Kwee Yong2
1University College London Hospitals NHS Foundation Trust, London, United Kingdom;2University College London, London, United Kingdom;3University of Leeds, Leeds, United Kingdom
Background/rationale or Objectives/purpose: Myeloma accounts for 15% of all haematological cancers. Advances in myeloma treatments have resulted in the fastest increasing survival rates among all cancers, so strategies to improve the quality of survival are required. The MASCOT cohort study aimed to assess levels of fitness and physical activity (PA) and explore whether these were associated with fatigue and quality of life (QOL) in myeloma patients in remission. We hypothesised that those who were fitter and more physically active would have lower levels of fatigue and better levels of QoL.
Methodology or Methods: This study included baseline data from 131 participants, mean age 61.6 (range 35–86), 55% male. Aerobic fitness (VO2peak) was measured by cardiopulmonary exercise testing, strength was measured on each leg and averaged over both legs (10RM), moderate-vigorous PA (MVPA) was measured objectively (accelerometry) and self-reported (GLTEQ). Patients reported fatigue (FACIT-F) and QoL (emotional and wellbeing subscales of FACT-G).
Impact on practice or Results: Mean VO2peak was 18.5 ± 7.2 ml/kg/min. Mean leg strength was 47.1 ± 24.3 kg. Mean MVPA = 35.1 ± 34.9mins/week and self-reported mean PA = 55.2 ± 45.5. Better fitness (β=.281, p = .007) and greater strength (β=.373, p = .0004) were associated with lower levels of fatigue. Fitness (β=.318, p = .002) and strength (β=.371, p = .0003) were positively associated with QoL. There were no significant associations between measures of PA and fatigue or QoL.
Discussion or Conclusions: VO2peak and PA were low in myeloma patients. Aerobic fitness and strength were associated with fatigue and QoL. Future research should develop interventions aimed at enhancing aerobic fitness and strength, and determine if these have a positive impact on fatigue and QoL.
265 Study Protocol: Physiotherapist-led exercise intervention delivered prior to and during stem cell transplant in patients with myeloma
Orla McCourt1,2, Abigail Fisher2, Gita Ramdharry1,2, Kwee Yong2
1University College London Hospitals NHS Foundation Trust, London, United Kingdom;2University College London (UCL), London, United Kingdom
Background/rationale or Objectives/purpose: To investigate the feasibility of delivering an exercise intervention as an integral part of the autologous stem cell transplant (ASCT) pathway for patients with myeloma.
Methodology or Methods: 75 myeloma patients will be recruited from a large UK hospital over 18 months to this randomised controlled feasibility trial. The intervention will involve part-supervised aerobic and resistance exercise with behaviour change support, individually tailored and delivered by a physiotherapist in 3 distinct phases – pre-ASCT (partly supervised), during admission for ASCT (supervised) and during recovery post discharge from ASCT admission (unsupervised with telephone support).
Study assessments will be conducted at 4 time-points: 8 weeks prior to planned ASCT, on/near day of ASCT, on/near day of discharge from ASCT hospital admission and 3 months post-ASCT. Primary endpoints will be feasibility measures including uptake, adherence and acceptability of study assessments, attrition and fidelity of intervention. Secondary measures will be fatigue (FACIT-F), quality of life (EORTC QLQ C-30, MY20 and FACT-BMT), functional capacity (6 minute walk test, grip strength, timed sit to stand), physical and sedentary activity levels and healthcare usage.
Impact on practice or Results: Results are expected in December 2020.
Discussion or Conclusions: The results of this study will contribute to the understanding of introducing exercise and behaviour change support as part of the ASCT pathway, how this relates to experiences of people with myeloma undergoing ASCT and will inform future research into the efficacy of exercise as part of preparation for and recovery from ASCT.
258 Predictors of exercise behavior after exercise training during breast cancer chemotherapy
Dong-Woo Kang1, Ki-Yong An1, Andria Morielli1, Christine Friedenreich2, Donald McKenzie3, Karen Gelmon3,4, John Mackey1,5, Robert Reid6, Kerry Courneya1
1University of Alberta, Edmonton, Canada;2Alberta Health Service, Calgary, Canada;3University of British Columbia, Vancouver, Canada;4British Columbia Cancer Agency, Vancouver, Canada;5Cross Cancer Institute, Edmonton, Canada;6University of Ottawa Heart Institute, Ottawa, Canada
Background/rationale or Objectives/purpose: To investigate the predictors of exercise behavior at three follow-up timepoints after exercise training during breast cancer chemotherapy.
Methodology or Methods: Data were obtained from the Combined Aerobic and Resistance Exercise (CARE) Trial. 301 stage I-IIIc breast cancer patients initiating adjuvant chemotherapy were randomized to either standard aerobic, high-dose aerobic, or aerobic plus resistance exercise. Long-term exercise behaviors were measured at 6-, 12-, and 24-month postintervention using a self-reported questionnaire and participants were categorized as meeting (1) aerobic only, (2) resistance only, (3) combined, or (4) neither exercise guideline. Predictors included demographic and medical variables, physical fitness, patient-reported outcomes, and theory of planned behavior constructs. Univariate and stepwise multinomial logistic regression were used for statistical analyses.
Impact on practice or Results: 264 (88%) participants completed all three follow-up assessments and were included in the analyses. Overall, cardiopulmonary fitness measured at postintervention was the strongest predictor of meeting any exercise guideline versus neither exercise guideline at all three time points. Predictors of meeting the combined aerobic and resistance exercise guideline included greater exercise motivation (p = .006) and a more detailed plan (p = .008) at 6-month follow-up, improved cardiopulmonary fitness between pre- and post-intervention (p < .001) and less perceived exercise difficulty (p = .005) at 12-month follow-up, and improved upper body strength after the intervention (p = .001) and less perceived exercise difficulty (p = .015) at 24-month follow-up.
Discussion or Conclusions: Predictors of exercise behaviors after exercise training during breast cancer chemotherapy are multifactorial and vary for different timepoints. Greater cardiopulmonary fitness post-treatment may have a positive impact on long-term exercise behaviors.
242 Enhancing physical activity maintenance following an exercise program for cancer survivors: a pragmatic randomized controlled trial
Emma McGinnis1, Laura Rogers2, Heather Leach1,3
1Colorado State University, Fort Collins, USA;2University of Alabama at Birmingham, Birmingham, USA;3Colorado school of public health, Denver, USA
Background/rationale or Objectives/purpose: Physical activity (PA) improves physical and psychosocial outcomes in cancer survivors. Supervised exercise programs can help survivors successfully increase PA, but maintaining PA following program completion is challenging. This study will test the effects of behavior change counseling on PA, three-months following the completion of a clinically implemented exercise program for cancer survivors.
Methodology or Methods: Participants will be enrolled in BfitBwell, a 12-week program consisting of supervised aerobic and resistance exercise sessions twice per week. To be enrolled in BfitBwell, individuals must be diagnosed with cancer, and undergoing or ≤ six months of completing treatment at the University of Colorado Cancer Center. Participants will be randomized to receive the current BfitBwell, or BfitBwell plus six, group-based PA behavior change counseling sessions adapted from an evidence-based PA intervention (BfitBWell+) (Rogers et al. 2012). PA will be measured pre-, post-, and three-months following program completion using the Godin Shepherd Leisure-Time Exercise Questionnaire.
Impact on practice or Results: At the three-month follow-up, we will compare differences in (1) weekly minutes of moderate to vigorous PA and (2) percent of participants meeting PA guidelines, between participants randomized to BfitBwell, or BfitBwell+. Based on a conjectured difference between means of 74 minutes of PA per week, with a standard deviation of 95, n = 30 per group will achieve 84% power.
Discussion or Conclusions: We hypothesize that participants in BfitBwell+ will report more PA at the three-month follow-up compared to participants in BfitBwell. Implications of these findings for clinically implemented cancer exercise programs such as BfitBwell include adding additional behavior change components to improve physical activity outcomes.
241 The Effect of Aerobic Exercise Intensity on Cancer Related Fatigue: A Pragmatic, Randomized Trial
Alexa DeBord1, Jeff Eagan2, Mary Hidde1, Brett Fling1, Arlene Schmid1, Heather Leach1,3
1Colorado State University, Fort Collins, USA;2University of Colorado Health, Fort Collins, USA;3Colorado School of Public Health, Denver, USA
Background/rationale or Objectives/purpose: Cancer-related fatigue (CRF) is one of the most debilitating symptoms of cancer treatment. Exercise can help manage CRF, however the optimal intensity to reduce CRF is unknown. This study will compare the feasibility, and the effects of vigorous versus moderate intensity aerobic exercise on CRF.
Methodology or Methods: Participants are adult cancer survivors enrolled in a cancer rehabilitation program at the UC Health Cancer Center and will be randomized to 12-weeks of vigorous interval exercise (2 minutes at 70% Heart Rate Reserve (HRR): 1-minute rest) or moderate continuous exercise (50% HRR). Exercise sessions will be twice per week, and exercise volume will be matched based on MET-minutes. CRF will be measured pre and post-program using the Functional Assessment of Chronic Illness Therapy-Fatigue scale (FACIT-Fatigue).
Impact on practice or Results: To assess feasibility, we will compare adverse events, adherence to the exercise protocol, and average duration of exercise between intervention groups. To examine the effects of vigorous versus moderate intensity aerobic exercise on CRF, we will use Analysis of covariance (ANCOVA) to compare post-program FACIT-Fatigue scores between groups, controlling for baseline fatigue.
Discussion or Conclusions: We hypothesize that vigorous exercise will be feasible, and on average, take less time per session than moderate exercise. Due to controlling for total exercise volume, we expect no difference in CRF reductions between groups. Vigorous intensity aerobic interval exercise may be a feasible and time conserving method to help reduce CRF in a cancer-rehabilitation setting.
229 Longer-term predictors of exercise patterns after exercise training during breast cancer chemotherapy
Ki-Yong An1, Dong-Woo Kang2, Andria Morielli1, Christine Friedenreich3, Robert Reid4, Donald McKenzie5, Karen Gelmon5,6, John Mackey1,7, Kerry Courneya1
1University of Alberta, Edmonton, Canada;2University of Alberta, University of Alberta, Canada;3Alberta Health Service, Calgary, Canada;4University of Ottawa Heart Institute, Ottawa, Canada;5University of British Columbia, Vancouver, Canada;6British Columbia Cancer Agency, Vancouver, Canada;7Cross Cancer Center, Edmonton, Canada
Background/rationale or Objectives/purpose: To report the longer-term predictors of exercise patterns during follow-up after exercise training during breast cancer chemotherapy
Methodology or Methods: 301 breast cancer patients initiating adjuvant chemotherapy were randomized to either standard aerobic, high-dose aerobic, or aerobic plus resistance exercise in the Combined Aerobic and Resistance Exercise (CARE) Trial. Follow-up exercise behaviors were measured at 6-, 12-, and 24-months postintervention and categorized as meeting the aerobic only, resistance only, combined, or neither exercise guideline at each timepoint. We identified exercise patterns across the three timepoints and predicted the number of times a patient was meeting neither (0-3) or the combined guidelines (0-3) during follow-up. Predictors included demographic, medical, fitness, psychosocial, quality of life, and motivational outcomes at pre- and post-intervention. Univariate and stepwise linear regression were used for analyses.
Impact on practice or Results: 264 (88%) participants were included in the analyses. The 5 most common exercise patterns during follow-up were meeting (1) combined or aerobic only (21.2%), (2) aerobic only or neither (13.7%), (3) always neither (11.0%), (4) always combined (9.5%), and (5) always aerobic only (8.0%). A higher number of times meeting the combined guideline was associated with higher strength (p = 0.002) and motivation (p = 0.017), lower fatigue (p = 0.018), and decreased VO2peak (p < 0.001); while a higher number of times meeting neither guideline was associated with lower VO2peak (p = 0.001), less strength (p = 0.001), higher difficulty in exercise (p < 0.001), and being from Edmonton (p = 0.009).
Discussion or Conclusions: Longer-term exercise patterns after exercise training are diverse and predicted by physical fitness, motivation, and fatigue.
227 Implementation science and exercise oncology: a partnership critical to improving psychosocial outcomes in cancer survivors
Laura Rogers1, Whitney Smith2, Maria Pisu1, Robert Oster1, Ana Baumann3, Haiyan Qu1, Mary Ellen Sheffield4, Alex Minter4, Michelle Martin5
1University of Alabama at Birmingham, Birmingham, USA;2University of South Alabama, Mobile, USA;3Washington University in St; Louis, St; Louis, USA;4Russell Medical Center, Alexander City, USA;5University of Tennessee Health Science Center, Memphis, USA
Background/rationale or Objectives/purpose: Objectives: Little is known about translation of evidence-based exercise oncology interventions (EOIs) to non-research settings and whether psychosocial benefits continue after translation. Here we describe our implementation toolkit, psychosocial effects, and implementation outcomes during translation of our efficacious EOI.
Methodology or Methods: Methods: We developed an implementation toolkit and performed a proof-of-concept implementation study assessing pre/post-intervention changes in psychosocial (fatigue, anxiety, depression, sleep dysfunction) and implementation (fidelity, acceptability, relative advantage, sustainability) outcomes when our EOI was delivered by a non-research site.
Impact on practice or Results: Results: The implementation toolkit included a manual, educational materials, and technical support. The non-research site implemented the EOI with 16 rural women cancer survivors (38% African-American; mean age 58 ± 12 years; mixed cancer types; mean months since diagnosis 54 ± 72). Significant pre/post intervention increases occurred for self-report weekly minutes of ≥ moderate intensity physical activity (146 ± 186, p = 0.009). Mean change for fatigue intensity (-0.6 ± 2.5, p = 0.40), fatigue interference (-0.6 ± 2.1, p = 0.28), HADS anxiety (-1.3 ± 1.8, p = 0.016), and HADS depression (-2.1 ± 2.0, p = 0.001) met or exceeded our efficacy results, PSQI sleep dysfunction did not. Fidelity (range 1 to 4) was high based on interventionist self-report (mean = 3.9 ± 0.1) and cancer survivor survey (mean = 3.4 ± 0.5). Organizational representatives reported mean acceptability = 4.9 ± 0.1, relative advantage = 4.9 ± 0.2, sustainability (political climate) = 4.5 ± 0.4, and sustainability (cost) = 4.3 ± 0.6 (all with possible range of 1 to 5).
Discussion or Conclusions: Conclusion and clinical implications: Using implementation science, we successfully translated an EOI to a non-research setting and achieved meaningful psychosocial benefits.
208 Social support from fellow exercisers: Predictive associations with quality of life and the moderating effect of gender in physical activity programs for cancer survivors
Emma Wolper1, Meghan McDonough2, Nicole Culos-Reed3
1University of Calgary, Calgary, Canada;2University of Calgary, Calgary, Canada;3University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: Cancer survivors experience quality of life declines that can be enhanced through physical activity (PA) and social support. Comparisons of the predictive effects of the different forms of social support received from fellow exercisers on quality of life in a PA program for survivors have not been examined. Therefore there is a need for continual quantification and conceptualization of the effects of social support on quality of life in the unique social context of exercise programs. Furthermore, gender is a potential moderator of the associations between social support and quality of life, but the majority of work in this area has focused on women with breast cancer, precluding such analyses. This research will examine predictive associations between social support from other participants in a PA program for cancer survivors and quality of life, and whether gender moderates these associations.
Methodology or Methods: Adults over the age of 18 years who have participated in a PA program for cancer survivors will complete questionnaires assessing several forms of social support (relatedness, autonomy support, and perceived support for exercise), and quality of life (physical, social, emotional, and functional well-being). Hypotheses will be tested using multiple linear regression. Significant interactions with gender will be graphed and probed using simple slopes analysis.
Impact on practice or Results: Data collection and analysis are ongoing.
Discussion or Conclusions: This work will contribute to understanding which forms of social support are most strongly associated with quality of life in PA settings, and help inform development of PA programs to enhance wellness for adult cancer survivors.
195 Feasibility and preliminary efficacy of a tailored physical therapy program for Dutch patients with metastatic breast cancer
Wim Groen1, Marieke Ten Tusscher1, Rachel Verbeek2, Edwin Geleijn3, Martijn Stuiver2,4, Neil Aaronson1
1Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, Netherlands;22Center for Quality of Life, The Netherlands Cancer Institute, Amsterdam, Netherlands;3Department of Physical Therapy, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, Netherlands;4ACHIEVE Centre of Applied Research, Faculty of Health, University of Applied Sciences Amsterdam, Amsterdam, Netherlands
Background/rationale or Objectives/purpose: To evaluate the feasibility and preliminary efficacy of a tailored, goal-directed and exercise-based physical therapy (PT) program designed for patients with metastatic breast cancer (MBC).
Methodology or Methods: We conducted a feasibility study among patients with MBC, including patients with bone metastasis. The PT intervention was delivered in the vicinity of the patients’ home and was tailored to the patients’ functional limitations, restrictions in activities and personal preferences. Patients set and evaluated their most important therapy goals together with the PT. Patient-reported outcomes (physical functioning, goal-attainment, fatigue, health-related quality of life, and satisfaction) were assessed pre- and post-intervention.
Impact on practice or Results: Fifty-five of the invited patients (response rate of 34%) participated in the study. Twenty-five patients dropped out, mainly due to disease progression. No major adverse events related to the intervention were reported. The main PT goal was fully or largely achieved by 22 patients (52%) and only partially achieved by an additional 15 patients (36%). Twenty-eight patients (85%) would “definitely recommend” the program to other patients with MBC. We observed a modest improvement in patient satisfaction with physical functioning (effect size 0.33) and a small but positive reduction in restrictions in activities of daily living (effect size 0.16). Small but positive changes were also observed for global health status and physical functioning (effect sizes 0.15 and 0.12).
Discussion or Conclusions: The tailored, goal-directed PT program for patients with MBC was very well received, was safe, facilitated patients in achieving their individual physical functioning related goals, and may improve quality of life.
187 Preparing educational material for children with cancer: case Finland
Lotta Hamari1,2, Sanna Salanterä3,4, Nicole Culos-Reed2
1Department of Nursing Science, University of Turku, TUrku, Finland;2Faculty of Kinesiology, University of Calgary, Calgary, Canada;3Department of Nursing Science, University of Turku, Turku, Finland;4Turku University Hospital, Turku, Finland
Background/rationale or Objectives/purpose: Childhood cancer and its treatment leave children at risk for negative physical and psychosocial early and late effects. Physical activity (PA) promotion has become an important part of the treatment to address such side effects. As part of knowledge translation, educational material to increase awareness about the benefits of PA should be available for health care staff and children with cancer and their families.
Methodology or Methods: The work begins with a landscaping questionnaire about PA guidance and materials used in Finnish hospitals. After these preliminaries, infographics and four videos will be prepared. The material will be based on pediatric oncology exercise manual (POEM;Chamorro-Viña et al.,2015) and pediatric oncology exercise guidelines which are in progress, with an international team and lead by the University of Calgary (iPOEG and Culos-Reed et al.,2019). The topics of the videos are: 1) The importance of PA in children with cancer, 2) PA during treatment (in-hospital), 3) PA during out-patient phase, and 4) PA in childhood cancer survivors. The material will be published by the Finnish national association for children with cancer and implemented by physical therapists at each hospital.
Impact on practice or Results: The need for educational material regarding PA promotion has been acknowledged in Finnish hospitals. After this project, the latest evidence-based knowledge about PA in children with cancer will be available for clinicians and families in Finland.
Discussion or Conclusions: International collaboration enables the translation of the latest knowledge and best practices from other parts of the world into Finnish childhood cancer care.
177 The physiatrist's role in cancer rehabilitation and exercise prescription
Toronto Rehabilitation Institute, Toronto, Canada; Princess Margaret Cancer Centre, Toronto, Canada
Background/rationale or Objectives/purpose: Background: Access to rehabilitation services to improve function and increase levels of exercise amongst cancer survivors are limited. Many survivors are denied rehabilitation or are excluded from exercise interventions because of prescriber fear or discomfort assessing restriction or patient capability. Cancer physiatrists are medical doctors specialized in the diagnosis and rehabilitation of physical impairment, and can provide additional guidance on the safe prescription of exercise.
Methodology or Methods: Method: This presentation will focus on the physiatrist's role in cancer care extending from diagnosis through survivorship and into palliative care.
Impact on practice or Results: Results: Discussion will include a historical framework from which cancer rehabilitation emerged from the other rehabilitation subspecialities. The unique cancer impairments managed by physiatrists thoughout survivorship will be highlighted with case examples. Furthermore, the physiatrist role within the multidiscipinary model of care will be presented with a balanced discussion surrounding political, economic, and technical factors limiting accessibility to physiatry services. Special emphasis will be paid on the unique conditions requring physical assessment, treatment and restriction when prescribing exercise. Finally, the current state of evidence for cancer rehab interventions and future clinical-research directions will be presented.
Discussion or Conclusions: Conclusion: As the number of survivors continues to increase with more effective treatments, so does the number of physical impairments. Physiatrists play a pivital role in the effective diagnosis and treatment of impairment and exercise presciption. The growing demand for rehabilitation and exercise to be part of standard cancer care represents a dramatic shift in patient value towards survivorship that must be met with open ears and discussion.
169 Social support from physical activity instructors in group exercise programs for cancer survivors
Meghan H. McDonough1, S. Nicole Culos-Reed1,2, Emma Wolper1
1Faculty of Kinesiology, University of Calgary, Calgary, Canada;2Cumming School of Medicine, University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: Social support obtained in exercise programs can contribute to coping with cancer and adherence to physical activity. Most research has focused on support from other cancer survivors, and comparisons to peer support groups. Exercise instructors are also a potential source of support, as they can provide informational and emotional support, and set the tone for social interactions in the group. The purpose of this study was to examine the perspectives of cancer survivors in group exercise programs on what interpersonal interactions with exercise instructors they experienced as supportive.
Methodology or Methods: Focus groups (n = 12) and individual interviews (n = 12) were conducted with N = 24 participants in group exercise programs for cancer survivors (n = 19 women; age = 41–75 years, n = 15 breast cancer diagnosis). We usedthematic analysis (Braun & Clarke, 2016), and responses were considered in light of social support theory (Feeney & Collins, 2015) that conceptualizes supportive functions that may help cope with adversity, and facilitate thriving.
Impact on practice or Results: Instructors helped participants cope with cancer by adapting activities for individual needs and encouraging individual improvement, expressing empathy for coping with cancer, and incorporating mindfulness practices. They supported thriving by engaging participants through facilitating group interaction, modeling exercise, and planning engaging activities; encouraging effort and participation; and building relationships through being friendly, forthcoming, and involved for an extended period of time.
Discussion or Conclusions: Results highlight opportunities for exercise staff to support cancer survivors in their classes, and suggest avenues for future research on how to enhance skills for providing effective social support among physical activity practitioners.
161 Social support predicts trajectories of light physical activity in post-treatment breast cancer survivors
Evelyne Felber Charbonneau1, Meghan H. McDonough1, Catherine M. Sabiston2
1University of Calgary, Calgary, Canada;2University of Toronto, Toronto, Canada
Background/rationale or Objectives/purpose: Physical activity (PA) can alleviate many challenges encountered by breast cancer survivors. Social support may play a role in that process as it is positively associated with PA and quality of life. Social support is multidimensional, and it is unknown what supportive functions are the strongest predictors of PA. This study examined associations between quantity and quality of support functions, and trajectories of change in objective light and moderate-to-vigorous PA (MVPA) in post-treatment survivors.
Methodology or Methods: Women (N = 158, Mage = 55.06) completed quantity and quality of social support measures at baseline (M = 6.98 months post treatment), and objective PA (Actigraph GT3X accelerometers) at baseline and 3, 6, and 9 months. Latent growth curve modeling was used to test whether social support variables predicted trajectories of change in PA.
Impact on practice or Results: Greater quantity of listening support was associated with lower initial levels (β = -35.72; p = .02), but greater increases in light PA (β = 11.71; p = .02). Greater quantity of understanding breast cancer support (β = 8.77; p = .07) and total quantity support (β = 12.57; p = .09) were marginally associated with increased light PA. Social support did not predict MVPA.
Discussion or Conclusions: Quantity of listening support and potentially understanding breast cancer support, and total support are associated with increases in light PA. These may reflect a need for introducing providers of support to facilitate behavior change post-treatment, and may be important targets for intervention research on supporting PA. More research is needed to examine whether the unexpected negative association with listening support reflects greater stress or support needs.
111 Acute Effects of Exercise on Fatigue and Energy in Cancer Survivors
Mary Hidde, Kelley Covington, Heather Leach
Colorado State University, Fort Collins, USA
Background/rationale or Objectives/purpose: Fatigue is a common, persistent side effect of cancer treatment. Regular exercise can improve fatigue in cancer survivors, but the acute effects of exercise on cancer-related fatigue is not as well understood. This study examined fatigue and energy levels immediately before, and after exercise sessions during an 8-week community-based exercise program.
Methodology or Methods: Fatigue and energy levels were self-reported by cancer survivors immediately before, and after exercise sessions using a 0–10 visual analog scale (0 = low, 10 = high). Weekly exercise sessions included moderate-intensity aerobic, resistance, balance and flexibility exercises in a group-based circuit format. Paired samples t-tests examined differences in fatigue and energy levels from before to after each exercise session, averaged across all sessions. Only participants who attended ≥1 exercise session were included in the analyses.
Impact on practice or Results: Participants (n = 36) were M = 41.94 ± 25.27 years old, had been diagnosed with breast (50%), prostate (11.1%), or other cancer (39.9%), and most had completed chemotherapy or radiation treatment (n = 26, 74.3%). On average, fatigue decreased MΔ = -.57 ± 1.25, [t(35) = 2.72, p = .010], and energy increased [MΔ = .99 ± 0.94, t(35) = -6.37, p = .000] from before to after exercise sessions.
Discussion or Conclusions: This study found that exercise had acute, positive effects on energy and fatigue among cancer survivors participating in a community-based exercise program. Results suggest that a single bout of exercise may be an effective strategy for reducing fatigue for cancer survivors. Future studies should examine the effect of different doses of exercise on fatigue and energy levels during and after cancer treatment.
37 Association between the 6-minute walk test and exercise confidence in patients after colorectal cancer surgery: A prospective observational study
Cancer Hospital Affiliate to School Medicine,Sichuan Cancer Hospital, Chengdu, China
Background/rationale or Objectives/purpose: The exercise confidence was very important for patients’ rapid recovery after colorectal cancer surgery. Exercise confidence predicts exercise adherence in patients after colorectal cancer surgery. However, The association between simple tests of functional capacity on exercise confidence are not known.To evaluate the association between a single 6-min walk test (6MWT) and exercise confidence in patients after colorectal cancer surgery.
Methodology or Methods: Observational study enrolling patients after colorectal cancer surgery who completed an Exercise Confidence Survey at baseline and following the 6MWT. Paired t-test was used to compare repeated-measures data, while Repeated Measures Analysis of Covariance was used for multivariate analysis.
Impact on practice or Results: 106 patients after colorectal cancer surgery were enrolled in the study (males, 62%; mean age, 64 ± 12 years). Baseline Exercise Confidence was inversely associated with age (p < 0.01), and depression (p < 0.001). The 6MWT was associated with an improvement in Exercise Confidence (F(1,92) = 5.0,
P = 0.03) after adjustment for age, gender, and depression.
Discussion or Conclusions: The 6MWT is associated with improved exercise confidence in patients after colorectal cancer surgery .Nurse could practice 6-minute walk test for patients after colorectal cancer surgery to improve patients’ exercise confidence.
K. Implementation science/knowledge translation
561 Does the Distress Assessment and Response Tool (DART) Save Lives? Evaluating the Impact of DART on Cancer-related Survival at the Princess Margaret Cancer Center
Bryan Gascon1, Yvonne Leung2,3, Osvaldo Espin-Garcia4, Gary Rodin1,3, Madeline Li1,3
1Department of Supportive Care, Princess Margaret Cancer Centers, University Health Network, Toronto, Canada;2de Souza Institute, University Health Network, Toronto, Canada;3Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Canada;4Department of Biostatistics, Princess Margaret Cancer Center, University Health Network, Toronto, Canada
Background/rationale or Objectives/purpose: Symptom management is an integral component of cancer care, but evidence demonstrating clinical benefits of symptom screening is limited. The Distress Assessment and Response Tool (DART) at the Princess Margaret Cancer Centre (PM) integrates electronic symptom screening with triaged interprofessional clinical assessment. DART has been administered routinely in all clinics at PM since 2010. The impacts of DART on clinician response and cancer-related survival were evaluated.
Methodology or Methods: The study population consisted of cancer patients who attended PM between 2010–2014. Data on clinician response to DART-identified symptoms, sociodemographic, medical, and cause-of-death were extracted from hospital and provincial cancer registries. Propensity for DART completion, accounting for age, sex, marital status, income, cancer type and stage, were incorporated into inverse probability treatment weighting (IPTW) analyses to estimate the effect of DART completion on overall cancer-related survival.
Impact on practice or Results: A total of 1,329 charts were reviewed for randomly selected patients who scored ≥ 4 on select physical and emotional DART symptoms between 2011–2014. Pooled clinician assessment and intervention rates were 65% and 48%, respectively. Over the study period, 43% (n = 20,792) of patients completed DART at least once. Over the same period, there were 13,142 cancer-related deaths amongst all PM patients. After propensity score analysis, DART non-completion was associated with lower cancer-related survival (HR 4.0; 95% CI 3.9–4.1) than those who completed DART.
Discussion or Conclusions: DART completion was associated with better overall survival in a large heterogeneous cohort of cancer patients. Further exploration is required to determine the contribution of clinician response rates to the potential mechanisms underlying this association.
656 Development and piloting of a patient centered, risk-stratified supportive care clinical pathway for Head & Neck cancer patients in a Chilean cancer center
Loreto Fernandez Gonzalez1, Loreto Moreira2, Cesar Casanova2,3, Piero Bettoli2
1Social and Behavioral Health Sciences, Dalla Lana School of Public Health, University of Toronto, Toronto, Canada;2Instituto Oncológico Fundación Arturo Lopez Perez, Santiago, Chile;3Universidad Mayor, Santiago, Chile
Background/rationale or Objectives/purpose: Unmet supportive care needs for head and neck cancer (HNC) patients are well documented. Clinical pathways (CP) intend to standardize personalized multidisciplinary care, optimize resources, and ensure continuity of care. We developed and piloted a HNC-CP, focused on high-risk patients early identification for supportive care.
Methodology or Methods: CP was designed as a quality improvement initiative in a private non-profit cancer center in Santiago, Chile. Process included 1) literature review 2) assessment of patients records to identify supportive care needs 3) development of a risk profile according to treatment plan and impact on QoL 4) institutional resources assessment. Piloting began on October 2017. Implementation evaluation was conducted following Proctor et al. in July 2018.
Impact on practice or Results: CP consists on a single-visit comprehensive assessment (CA) by psychologist, nutrition specialist and speech-language pathologist. All patients should have at least a pre and posttreatment CA. High-risk profile was defined as combination of nutritional/functional low status, socioeconomic vulnerability and multimodal treatment. High-risk patients are followed up during and after treatment. The CP was piloted with 33 patients. 33% had severe malnutrition at first CA, 24% presented significant psychosocial and economic stressors. 21% met high-risk criteria. Regarding implementation, acceptability and appropriateness were high, with disparate physicians’ adoption, along with institutional barriers for joint multidisciplinary assessment.
Discussion or Conclusions: CP is a useful device for identifying and managing high-risk HNC patients in a developing country. Patients deal with needs and toxicities requiring ongoing supportive care. Despite high acceptability and appropriateness, HNC supportive care faces implementation difficulties related to physician referrals and institutional barriers.
536 How to do PROs in cancer care? - Tailoring process of implementation strategies for PRO assessments in cancer routine care
Mirja Gianna Goerlach, Theresa Schrage, Holger Schulz, Christiane Bleich
University Medical Centre Hamburg-Eppendorf, Hamburg, Germany
Background/rationale or Objectives/purpose: The successful implementation of patient-reported outcomes (PROs) in clinical routine faces many challenges, first and foremost the lack of consideration thereof in the patient care process. The aim of this study is to design suitable implementation strategies for improving the effectiveness of PRO assessment in inpatient and outpatient cancer routine care.
Methodology or Methods: Interviews with oncological patients (N = 28) and medical staff (N = 4) as well as focus groups with medical staff (N = 18) across five different oncological clinics were conducted. On the basis of these, qualitative content analysis revealed relevant barriers and facilitators for implementation of PROs in cancer care. These were subsequently presented in an expert discussion culminating in the development of strategies and a model of implementation following the principles of the Medical Research Council and the RE-AIM Framework.
Impact on practice or Results: Four PRO implementation strategies were developed to fit the demands of the five different oncological clinics. Those were: 1) a concise questionnaire, 2) electronic input into a software with direct interface to patients’ records, 3) software and process training for medical staff and 4) guidance on pathways for further care.
Discussion or Conclusions: Key to improving the effectiveness of PRO assessment in the time-critical clinical environment is the utilization of easy-to-use, electronic PRO questionnaires directly linked to patients’ records thereby improving consideration of PROs in patient care. In order to validate the effectiveness of this implementation process further, an evaluation of implementation following a stepped wedge design will be conducted.
395 Using Survivorship Care Plans as a Transition Tool from the Cancer Centre to Primary Care
Brittany Mutsaers1, Carrie Liska2, Justin Presseau3,4,1, Gail Laroque2, Cheryl Harris5, Kednapa Thavorn5, Marie-Hélène Chomienne6, Sophie Lebel1
1School of Psychology, University of Ottawa, Ottawa, Canada;2Wellness Beyond Cancer Program, The Ottawa Hospital, Ottawa, Canada;3Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada;4School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada;5Ottawa Hospital Research Institute, Ottawa, Canada;6C.T; Lamont Primary Health Care Research Centre, University of Ottawa, Ottawa, Canada
Background/rationale or Objectives/purpose: Survivorship Care Plans (SCPs) are intended as a tool for cancer survivors and primary care providers (PCPs) to facilitate survivors’ transition from active cancer treatment to follow-up in primary care. Barriers to the uptake of SCPs in real-world settings may contribute to the mixed research findings on the outcomes of SCP use. The objectives of this study are to: a) identify barriers and enablers perceived to influence SCP use among cancer survivors and PCPs in urban, rural, and remote settings; and b) develop recommendations for addressing identified barriers and maximizing enablers to SCP use.
Methodology or Methods: We aim to recruit forty PCPs and cancer survivors to participate in semi-structured interviews developed using the Theoretical Domains Framework (TDF) to systematically identify barriers and enablers to SCP use. Participants will be recruited through the Wellness Beyond Cancer Program at The Ottawa Hospital, Canada. Content and thematic analysis will be conducted. The results will be used to develop recommendations for implementing SCPs into practice.
Impact on practice or Results: Coordinating follow-up care between cancer specialists and PCPs is important for ensuring that cancer survivors receive adequate follow-up care. While SCPs are recommended to facilitate this transition, guidance on the optimal use of SCPs in practice is needed.
Discussion or Conclusions: Preliminary results will be presented. Overall, developing recommendations for implementing SCPs in diverse settings is important for evaluating the impact of SCPs on patient outcomes. Adequate evaluation will then help decision makers determine if benefits gained from SCPs justify the additional time and resources required.
328 What Canadian Association of Psychosocial Oncology (CAPO) members want from the Research Advisory Committee? A survey of members’ research needs and priorities
University of Ottawa, Ottawa, Canada
Background/rationale or Objectives/purpose: Objectives: The Canadian Association of Psychosocial Oncology (CAPO) seeks to foster interdisciplinary excellence in psychosocial oncology research, education and clinical practice. The CAPO Research Advisory Committee specifically works to support excellence in psychosocial oncology research by encouraging research in diverse areas. To guide its future efforts, the Research Advisory Committee is documenting the current research needs of CAPO members and their perspectives on the Committee's main responsibilities.
Methodology or Methods: Methods: Current and past CAPO members will be asked to complete a brief online survey in May 2019 via personalized emails, the CAPO weekly newsletter, and the CAPO website. In addition to descriptive information about their professional roles and current involvement in research, members will be asked about: a) the kinds of training they need to support their research efforts, b) the best medium to receive this support, c) responsibilities of the CAPO Research Advisory Committee towards CAPO members, and d) whether they support the creation of a national Psychosocial Oncology Research Network to facilitate multi-centre studies and collaborations. Data will be analyzed using content analysis and descriptive statistics.
Impact on practice or Results: Results: Final survey results will be presented at the annual meeting.
Discussion or Conclusions: Conclusion and clinical implications: The results of this survey will inform CAPO and other Psychosocial Oncology Societies about ways they can meet the needs of their members. In the context of an increasingly competitive research environment, research committees play an important role in supporting the efforts of their members and building the evidence-base for practice.
96 Implementation & Upscaling: Enhancing national implementation of evidence-based innovations to improve quality of life of cancer patients in the Netherlands
Chantal Lammens, Vanessa Bouwman, Myrle Stouten
Netherlands Comprehensive Cancer Organisation, Utrecht, Netherlands
Background/rationale or Objectives/purpose: Too many evidence-based interventions (EBI's) have been developed in the field of psycho-oncology of which the availability doesn’t reach beyond the research phase and site. EBI's are not automatically adopted and implemented, let alone available on a nationwide level. A diversity of barriers and enablers can be defined. Implementation and upscaling is often seen as the responsibility ‘of the field’, but what is practically needed, how to arrange this on a structural basis and who can be held accountable?
Methodology or Methods: Starting with a proof of principle, five diverse EBI's were selected. Tailor-made nationwide implementation plans were developed, carried out and monitored. With lessons learned from this proof of principle, an ‘Upscaling guide’ is developed. This guide can be used for current and yet to develop EBI's, to optimize their upscaling process and enhancing nationwide implementation/upscaling and availability in the Netherlands
Impact on practice or Results: The upscaling guide, includes an ‘upscaling-model’ and pre-conditions for upscaling, such as reimbursement, education of (end)users, time, disentangle intervention and research. These pre-conditions need to be addressed to enhance successful upscaling of EBI's in the field of psycho-oncology in the Netherlands.
Discussion or Conclusions: Important lessons learned from this proof of principle is that successful implementation/upscaling of an EBI starts before the intervention itself is (fully) developed. It takes co-creation and teamwork from the start, in which it is essential to bring people with different areas of expertise together: expertise in (mental) healthcare, research, but also regarding reimbursement and (local and/or national) law & regulations. Upscaling takes time, tenacity and continuity. Those who are able to build a network, can go further
95 ‘Psychosocial training and research needs in oncology health care professionals working in hospitals’
Veronique Gerits1, Ellen Daly1, Angelique Verzelen1, Sabien Bauwens1,2, Eva Jacobs1,3, Wim Distelmans2,1, Lieve Vanderlinden4
1Cédric Hèle Institute, Mechelen, Belgium;2Universitair Ziekenhuis Brussel, Brussel, Belgium;3Forum Palliatieve Zorg, Wemmel, Belgium;4Kom op tegen Kanker, Brussel, Belgium
Background/rationale or Objectives/purpose: The Cédric Hèle institute (CHi) - Flemish institute of Psychosocial Oncology - conducted an exploratory research to gain insight in (1) the needs and bottlenecks experienced by oncology health care professionals concerning education in psychosocial oncology; (2) relevant research themes in psychosocial oncology; (3) the needs and bottlenecks experienced by oncology health care professionals concerning the implementation of scientific research and (4) how to bridge the gap between research and clinical practice.
Methodology or Methods: CHi performed an online questionnaire that was sent by e-mail to all members of the online CHi- community working in hospitals. 1045 e-mails were sent with a 19% (n = 201) response rate. The questionnaire consisted of 3 parts. Training and research needs were explored in part one and two. Professional data were collected in part 3. Each part of the questionnaire consisted of open and closed questions.
The results of the closed questions will be analysed and presented in pie and bar charts. For the qualitative data, thematic analysis will be used to draw conclusions.
Impact on practice or Results: The data collection was completed in February 2019. Results will be available by June 2019.
Discussion or Conclusions: CHi will use the results of this study to keep their current training offer up to date and adapted to the needs of oncology health care professionals.
The insights of this study will lead to a better knowledge and implementation of good practices in order to continue to bridge the gap between psychosocial oncology research and clinical practice in hospital settings.
L. Palliative care
742 Dying with Dignity in final days-Patients and Family members preferences
Saranya Sundarraju1, Veenavani Nallepalli2, Karthikeyan Perumal3, Prasanna Govindarajan4, Krishna kumar Rathnam5, Vigneshwaran K5
1Annamalai University, Chidambaram, India;2Sri Balaji college of Physiotherapy,BIHER, Chennai, India;3Kamakshi memorial Hospital, Chennai, India;4UNIVERSAL Hospital, Salem, India;5Madurai meenakshi hosptal and research center, Madurai, India
Background/rationale or Objectives/purpose: As comfort measures intensify, so should the support provided to the dying patient's family. After the patient's death, palliative care focuses primarily on bereavement and support of the family. Lack of effective, patient- family communication can increase the psycho social distress leading to poor Quality of death, where the dying patients’ true feelings, concerns and needs (Psycho-Social-Spiritual) are unaddressed.To develop a study which purports a meaningful conversation for terminal ill cancer patients and their family members,to squeeze out the final drops of life like their medical preferences, medical choices, desires and patients favorite place to spend their final days that will adhere to the rights of the patient to painless death. This study will be a torch bearer in Indian health care system that contributes to formulate common guidelines among all health care system to promote dignity among dying patients
Methodology or Methods: A convergent parallel mixed methods design involving both Qualitative and Quantitative methods.Patient Dignity inventory (PDI) chochinov et al 2005 is used to measure the level of dignity of patient. Qualitative Data were analyzed using content analysis and Quantitative analysis are analyzed using appropriate statistical packages. A total of 60 palliative care patients and their care takers were recruited from five inpatient palliative care units in five districts of Tamil Nadu including both urban and rural patients from Chennai, Pondicherry, Tiruvarur, Trichy and Madurai.
Impact on practice or Results: From the results of the study it is inferred that the level of dignity of patients dying in palliative care was found to be very poor. The Qualitative analysis results gave raise to some of the important emergent themes like enhanced respect of self in decision making, promotion of effective interaction about their needs, unfinished business and patient preferences of staying at home during death, promoting legacy and willingness to die without any life stabilizing devices
Discussion or Conclusions: This study will help promote the importance of the concept of dignity among health care professionals, nurses and other workers in the field of palliative care who emphasise the importance of managing symptoms alone. The study also claims addressing psycho social and spiritual needs are equally important along with treating physical symptom. As the study discusses the aspects of death it is culturally sensitive.
724 New Frontiers for AYA Oncology: Developing an Integrated AYA Clinic between Palliative Care and Psychiatry at Princess Margaret Cancer Centre
Pamela Mosher1,2, Ahmed Al-Awamer1
1Princess Margaret Cancer Centre, Toronto, Canada;2Sick Kids Hospital, Toronto, Canada
Background/rationale or Objectives/purpose: Identify AYA patients’ unique palliative care needs.
Describe the challenges of integrating palliative care in the AYA population
Outline an approach to communicating with AYA about palliative care issues
Background: Early adolescence and young adulthood is a time of developing personal identity, relationships, careers and financial independence. Individuals in this age group may have limited exposure to adverse life experiences. Despite strong calls for early integration of palliative and psychosocial care in the Adolescent and Young Adult (AYA) cancer population, significant gaps still exist in the delivery of palliative and psychological care for this group. Little is known about AYA patients’ end of life preferences or their psychological experiences while receiving palliative care. To address some of these unknowns, our interdisciplinary team developed a new integrated palliative and psychosocial clinic for AYA patients.
Methodology or Methods: Over 100 AYA patients and families have been assessed by an attending palliative care physician and a psychiatrist together in our new clinic. Trainees from multiple disciplines rotate in the clinic. We have identified important AYA clinical needs, interventions, and barriers to care.
Impact on practice or Results: Early access to consolidated palliative and psychosocial care is helpful for patients, families and oncology teams.
Discussion or Conclusions: We will present our experience in working with this complex patient population and several lessons learned. More research and clinical models are needed to provide integrated support to AYA's requiring palliative care. Using age-appropriate interventions and advance care planning tools may be helpful for palliative care clinicians to address AYA patients’ needs.
692 Palliative care transitions from acute care to community-based care: A systematic review
Stephanie Saunders1, Tieghan Killackey2, Allison Kurahashi1, Chris Walsh3,4, Kirsten Wentlandt5,6, Sarina R Isenberg1,7
1Temmy Latner Centre for Palliative Care, Sinai Health System, Toronto, Canada;2Lawrence S; Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada;3Library Services, Sinai Health System, Toronto, Canada;4School of Communications and Nursing, George Brown College, Toronto, Canada;5Division of Palliative Care, University Health Network, Toronto, Canada;6Division of Medical Oncology and Division of Palliative Medicine, Department of Medicine, University of Toronto, Toronto, Canada;7Division of Palliative Care, Department of Family and Community Medicine, University of Toronto, Toronto, Canada
Background/rationale or Objectives/purpose: Transitioning from the hospital to the community is a vulnerable point in patients’ care trajectories, yet little is known about this experience within the context of palliative care (PC). We conducted a systematic review to investigate whether receiving specialist PC interventions in-hospital impacted the transition to the community when compared to usual care.
Methodology or Methods: Searches were performed in 4 databases (Medline, EMBASE, Proquest, CINAHL). Four reviewers screened records using the following inclusion criteria: 1) peer-reviewed empirical study, 2) adult sample, 3) experimental or quasi-experimental study design, 4) receiving specialist PC in-hospital, and 5) assessment(s) of transition-based outcomes.
Impact on practice or Results: 1514 studies were identified and 9 met inclusion criteria. Studies were published recently (>2016; n = 7, 64%). Specialist PC interventions were delivered by multi-disciplinary care teams as part of inpatient PC triggers, discharge planning programs, and transitional care programs. In-hospital palliative care was associated with a decrease in hospital readmissions and an increased likelihood of discharge support for those who received inpatient PC. Most studies were at high risk of bias.
Discussion or Conclusions: Despite significant heterogeneity in study designs, receiving PC in-hospital appears to improve transitions for patients. In examining transition-based outcomes, studies predominantly reported on system-level outcomes. Few studies incorporated patient reported outcome measures or communication-based outcome measures. This narrow analysis denies the importance of patient perspectives and communication outcomes during this complex period of transitional care. Future research should aim to integrate a broad range of outcome measures when evaluating PC interventions in order to provide appropriate transitional care for the PC population.
664 Effects of age and cannabis use on cancer-related symptoms in patients seeking specialized symptom management
Kristine Donovan, Lora Thompson, Diane Portman
Moffitt Cancer Center, Tampa, USA
Background/rationale or Objectives/purpose: Despite increasing use of cannabis for cancer-related symptoms, few studies have examined its relationship to patients seeking specialized symptom management. Based on previously reported relationships between cannabis use and both younger age and more moderate to severe symptoms, we examined age-related differences in symptom severity in patients identified as cannabis users/non-users. We hypothesized that age (young adult/adult/older adult) would be negatively associated with symptom severity.
Methodology or Methods: Participants were 816 patients (mean age 55 years; range = 18–90) in active treatment who completed the Edmonton Symptom Assessment Scale-Revised-css and underwent urine drug testing for tetrahydrocannabinol (THC).
Impact on practice or Results: Approximately 30% tested THC-positive. In analysis of variance, there were significant (p < .05) main effects for age (lack of appetite, shortness of breath) and cannabis use (lack of appetite, difficulty sleeping) and significant interactions between age and cannabis use (pain, anxiety, depression). Mean comparisons showed shortness of breath was worse in adults and older adults and lack of appetite was worse in older adults; difficulty sleeping and lack of appetite were worse in cannabis users; pain was worse in young adult and adult cannabis users, and anxiety and depression were worse in adult cannabis users. In mediational analysis, the relationship between age and difficulty sleeping, but not between age and lack of appetite, shortness of breath, or spiritual well-being, was mediated by cannabis use.
Discussion or Conclusions: Findings suggest age-related differences in difficulty sleeping in this population. This difference can be explained by the relationship of cannabis use to younger age and greater difficulty sleeping.
630 Experiential avoidance in advanced cancer: patients’ and therapists’ perspectives
Sarah Davis1, Marc Serfaty1, Joseph Low1, Anne Lanceley2
1Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, United Kingdom;2EGA UCL Institute for Women's Health, University College London, London, United Kingdom
Background/rationale or Objectives/purpose: To explore whether patients with advanced cancer who received ACT engaged in experiential avoidance; why did they engage in this behaviour; were therapists able to address the behaviour using ACT.
Methodology or Methods: Qualitative interviews were conducted with 9 patients who received ACT. 2 dyadic interviews were conducted with 2 ACT therapists. Interviews were transcribed verbatim and a thematic analysis was conducted. Data from both groups of interviews were triangulated.
Impact on practice or Results: Key themes were identified: Patients engaged in a number of avoidance behaviours. Worry, anxiety and rumination prevented people from carrying out normal activities because of the fear of pain or fatigue. Some avoided social contact, as they did not want to talk to people, so remained at home. People avoided talking to their families about their emotions surrounding their illness, because they felt guilty and anxious and did not want to upset them. They had difficulties expressing their own needs.
To enable patients to fully engage in therapy, therapists had to allow them time to relate their personal narratives/ stories surrounding their illness. Therapists got patients to accept their experiences by getting them to focus on what's important to them (i.e. their values) and to behave accordingly. Some patients were resistant and couldn’t accept their experiences due to entrenched behaviours, and continued to take steps to avoid them.
Discussion or Conclusions: Experiential avoidance was common amongst patients and caused a lot of distress. Therapists had to modify the language they used and regularly repeat information about ACT processes to enable patients to change behaviours.
618 Life-sustaining Treatments Withdrawal in Keelung Chang Gung Memorial Hospital: Death with Dignity
Yun-Cong Zheng1, Chien-Hong Lai2
1Department of Neurosurgery, Chang Gung Memorial Hospital, Keelung Branch, Keelung, Taiwan;2Division of Hematology-Oncology, Chang Gung Memorial Hospital Keelung, and Lakeview Branch, Keelung, Taiwan
Background/rationale or Objectives/purpose: Background:
Taiwan's hospice palliative care act was promulgated in year 2000. The act had been further amended for three revisions in the past decade. The 2011 amendment defined the situations that life-sustaining treatments (LST) may be terminated or withdrawn in patients with terminal illness. We reportthe practice of LST in 2015 ∼2017.
Methodology or Methods: Methodology:
KCGMH is a critical hospital for traumatic, critical and cancer patients in the northeast corner of Taiwan. 78 patients received LST withdrawal. We retrospectively collected the information about the hospice course.
Impact on practice or Results: Impact on practice for your abstract:
The patients were 50 males and 26 females. The age ranged 11∼ 94. The most common causes of end-of-life of LST withdrawal are cancer (29), brain diseases (23), and kidney diseases (9). Accidents account for 9.2% of withdrawals, with 2 trauma and 5 OHCA. Most of patients received LST withdrawals were at intensive care units. Five were withdrawn in ordinary wards, with 2, 0, and 3 in respective year. Most of patients died within 3 days of withdrawal, except 1 cancer female 17 days, 1 cerebrovascular accident (CVA) male 8 days, and another CVA male 197 days. Palliative care team (PCT) visited patients or family at least once, before LST withdrawal.
Discussion or Conclusions: Discussion:
As palliativecare systemhad been set up, death with dignity was not a dream by the bridging of our PCT. Taiwan initiated “patient right to autonomy act” in 2019. We hope to see that LST withdrawal could be applicable to more terminal situations by patients’ advance directive.
610 The Pathway to Spiritual Healing: Social Workers’ Roles in Palliative Care in Taiwan
Ling Yeh, Pei-Shan Yang, Ping-Chuan Hsiung
National Taiwan University, Taipei, Taiwan
Background/rationale or Objectives/purpose: The nature of interdisciplinary palliative care can make professionals lose sights of their unique contributions in the team. This study aims to contribute to literature with clinical evidence of the unique social work roles in the palliative care team.
Methodology or Methods: With purposive sampling and snowballing, four experienced social workers in palliative care in Taiwan were interviewed using a semi-structured interview guide. Their average work experience was 19 years and 1 month (ranged from 5 to 27 years). Interviews were recorded and transcribed verbatim to maintain data integrity, and critical discussions were routinely held among research team members to reduce perceptual bias. Open coding procedure and thematic analysis was then performed.
Impact on practice or Results: This study proved that social workers are key to spiritual healing of cancer patients. Four sub-roles were identified: (1) to facilitate the patient-centered holistic care as social workers applied life-review to locate patients’ inner strengths and to reach for spiritual peace; (2) to broaden conversations of symptom-management to dialogues on patients’ individual concerns and suffering with the aim to enhance patients’ personal efficacy; (3) to engage patients and families to communicate openly and re-align roles in family functioning; (4) to open up future-oriented death and dying conversations and planning for patients through the use-of-self of social workers.
Discussion or Conclusions: It is suggested that clinical training should emphasize more on how social workers may use their selves to obtain optimal care. The four roles can also be used in in-service training to facilitate inter- and intra-disciplinary conversations in maximizing the interdisciplinary collaborations in palliative care.
598 The influence of traditional Chinese culture on the meaning of dignity in advanced cancer patients in Mainland China
Qiaohong Guo1, Lili Ma1, Dongmei Chuang2, Lihui Liu2, Haimei Geng2
1Capital Medical University, Beijing, China;2Beijing Shijitan Hospital, Capital Medical University, Beijing, China
Background/rationale or Objectives/purpose: To examine the meaning of dying with dignity in traditional Chinese culture, and explore generalisability of the Dignity Model to advanced cancer patients in Mainland China.
Methodology or Methods: Data were collected using literature review and interviews with 20 advanced cancer patients who were recruited from a tertiary hospital in Northern China. Review of literature and interviews were carried out concurrently, followed by synthesis of the findings. Framework analysis with both deductive and inductive methods was used based on the Chochinov Dignity Model.
Impact on practice or Results: Major categories of themes of the Dignity Model were supported under traditional Chinese culture. However, symptom distress, role preservation, autonomy, and living “in the moment” manifested contrary meanings in traditional Chinese culture, which respectively speaks to endurance of suffering, maintenance of collective roles rather than individual roles, decision making by family members according to “doing the good” intention, and preparation for the future instead of living “in the moment”. Subthemes, including cognitive acuity, continuity of self and maintenance of pride were not sufficiently supported. While three new subthemes emerged, including family connectedness, stigma, and financial concerns.
Discussion or Conclusions: The meaning of dying with dignity is culturally bound and understood differently in traditional Chinese culture. The influence of culture on the meaning of dying with dignity requires respect for individual patient's cultural beliefs in clinical practice. Modifications should be made to dignity therapy to ensure that it is culturally appropriate before applying it to Chinese patients.
586 Pilot study on improvement in the perception of dignity through the TIME Questionnaire in palliative care of the Hospital Group QUIRÓN-SALUD
Esther Martín Molpeceres1, Laura Edith Guerrero Gutiérrez2, Javier Monsalvo Saornil3, Arancha Esteban Gutiérrez1, Nuria Ruiz Gómez1, María Herrera Abián3, Eduardo García Romo1, David Rudilla García4
1Hospital General Universitario Fundación Jiménez Díaz, Madrid, Spain;2Hospital General Universitario Rey Juan Carlos, Madrid, Spain;3Hospital General Universitario Infanta Elena, Madrid, Spain;4Air Liquide Healthcare, Madrid, Spain
Background/rationale or Objectives/purpose: TIME, a tool aimed at improving the perception of the dignity of patients. Consider the dignity of the person associated with feeling heard and understood. In line with humanizing health, it is proposed to apply it in Palliative Care Units (PCU) of the Hospital Group QUIRÓN-SALUD.
Use the TIME Questionnaire at the patient's entrance for an optimal therapeutic link, favoring the perception of dignity and reducing stress.
Methodology or Methods: Experimental study Translation-countertranslation of the Time questionnaire was carried out by 2 bilinguals, EORTC-criteria. Sample of 34 patients (Age MD = 66.50, SD = 12.40, 12 men, 22 women), randomly distributed in 2 groups: TIME & Standard. It was administered: distress thermometer and Dignity Evaluation Questionnaire (CED-PAL), day 1 and 5 in both groups. The TIME-group was passed to the TIME-group at the beginning, after the pre measurements. Results obtained with SPSS, calculating descriptive statistics, t tests of related samples and effect size (Cohen's d).
Impact on practice or Results: TIME-GROUP:Distress t(17) = 3.930;p = .001;Size effect r(.32);d(.69) Dignity-Preservation t(16) = -7.984;pSize effect r(.68);d(1.87) Dignity-Threat t(16) = -5.035;pSize effect r(.36);d(.79) Dignity-perception t(16) = -10.570;pSize effect r(.62);d(1.60)
STANDAR-GROUP:Distress t(14) = 4.250;p = .001;Size effect r(.12);d(.36) Dignity-Preservation t(14) = -1.023;p = .324;Size effect r(.14);d(.29) Dignity-Threat t(13) = -2.649;p = .020;Size effect r(.36);d(.78) Dignity-perception t(13) = -3.713;p = .003;Size effect r(.33);d(.72)
Discussion or Conclusions: The treatment with TIME improves the perception of dignity in palliative patients, although the standard treatment obtains good results
585 Taking care of caregivers: Workshop for caregivers of palliative patients at home. A joint vision of nursing and psychology. Pilot Study
Javier Monsalvo Saornil1,2, Ana Belén Hernández Rubio2, Esther Martín Molpeceres1, María Herrera Abián1,2
1EAPS-Fundación Jimenez Díaz, Madrid, Spain;2Equipo Soporte Hospitalario- Hospital Universitario Infanta Elena, Madrid, Spain
Background/rationale or Objectives/purpose: Informal/family caregivers are a fundamental source of care for palliative patients. It considers the importance of the multidisciplinary team combining nursing and psychological techniques in providing a “person-centered” therapy model. Our proposal is to create a caregiver support group(CSG) focused on vthe detection of the most common circumstances of caregivers at home in order to improve the management of aspects regarding health and patient- caregiver relationships.
Methodology or Methods: This pilot study reviews current results presented in a 2–4 CSG meeting convened by nurses and psychologist specialized in palliative care.
The meeting sought to examine the state of the science of caregivers, identify the requirements found in health and psychological aspects to promote personalized attention within CSG, provide counseling techniques and support to cope with non-physical symptoms and to improve the communication with palliative patients.
Impact on practice or Results: 23 caregivers attended 4 CSG meeting. 87% (N = 20) completed a feedback questionnaire. Results showed a high level of satisfaction and a decrease on the unnecessary patients admission in the hospital.
The most common treated themes were 1) Isolation perceived by the caregivers at home. 2) The end of life decisions. 3) Communication between the family and healthcare system.
Discussion or Conclusions: Most accurate ways to measure topics treated in CSG meetings are required. We’re seeking feedback for future strategies that will be directed to maintain an ongoing relationship with palliative patient/family, in order to generate and test strategies to achieve the most effective, multidisciplinary and personalized intervention for the family caregivers in the end of life.
578 Implementation of family-based dignity therapy in advanced cancer patients in Mainland China: a study protocol
Qiaohong Guo1, Lili Ma1, Dongmei Chuang2, Lihui Liu2, Haimei Geng2, Zhiqian Chen1
1Capital Medical University, Beijing, China;2Beijing Shijitan Hospital, Capital Medical University, Beijing, China
Background/rationale or Objectives/purpose: To develop and evaluate culturally sensitive, family-based dignity therapy (FBDT) for patients with advanced cancer and their families in Mainland China.
Methodology or Methods: Mixed-methods design. In the first phase of the study, participants, including 20 advanced cancer patient-family dyads and 20 healthcare providers recruiting from a tertiary hospital, will be surveyed to evaluate the initial FBDT, which is developed based on the Chinese dignity model and by bringing in basic concepts and model of dignity therapy. The second phase will be a randomized controlled open-label trial. Eighty patient-family dyads will be randomly assigned to one of two groups: intervention group (FBDT and standard care) and control group (supportive interview and standard care). Both quantitative and qualitative outcomes will be assessed in face-to-face interviews at baseline, 1 day after and 2 weeks after intervention, as well as in phone interview with families at 1 month post bereavement. Data will be analyzed using qualitative and quantitative methods.
Impact on practice or Results: The initial FBDT will be revised based on participants feedback. The FBDT will be tested with advanced cancer patient-family dyads to examine its feasibility (recruitment and retention rates, details of FBDT implementation), acceptability (patient-family dyads satisfaction) and potential effectiveness (dignity, psychosocial and spiritual well-being, and quality of life for patients, grief experience and bereavement outcomes for family members, family communication and connectedness).
Discussion or Conclusions: The FBDT may be a feasible, acceptable and effective psychosocial intervention for Chinese patients with advanced cancer and their families. Findings of this study will contribute to advancement of palliative care practices in Mainland China.
556 Development of a quality of life instrument for children with life-limiting cancer
Josianne Avoine-Blondin1,2, Émilie Dumont1,2, Nago Humbert2, Marc-Antoine Marquis3, Michel Duval1,2, Serge Sultan1,2
1CHU Sainte-Justine, Montréal, Canada;2Université de Montréal, Montréal, Canada;3Université de Toronto, Toronto, Canada
Background/rationale or Objectives/purpose: In pediatric palliative care (PPC), the ability of professionals to evaluate quality of life (QoL) is the key to make appropriate decisions about the care to provide to patients. However, there is not yet valid instrument for this population. Thus, it remains difficult for clinicians to assess the QoL of children in PPC. The present study aims to develop a tool to assess the QoL of this population in oncology.
Methodology or Methods: (1) Describe the main dimensions of QoL in PPC. In a previous study, we interviewed 20 professionals in oncology to identify dimensions of QoL. In the present study, we conducted semi-structured interviews with 7 children with advanced cancer and 10 parents to validate the adequacy of these dimensions. (2) Once the major QoL's dimensions have been described, we created a draft of the tool according to a simple vocabulary using by the participants themselves. Expert judges, including patient partners and professionals in PPC, reviewed this draft and rated items for relevance, understandability and sensitivity.
Impact on practice or Results: The results highlight 7 dimensions of QoL. These dimensions were included in the first draft of the tool, which has been modified to improve relevance and understandability according to the comment of expert judges.
Discussion or Conclusions: The next phase consists of conducting a psychometric evaluation of the tool with the target population. The final version of the tool should provide an opportunity for dialogue between caregiver and patient to help make therapeutic decisions based on the evolution of children's QoL over time.
553 Quality of Life in pediatric palliative care in oncology: children and parents’ perspective
Josianne Avoine-Blondin1,2, Émilie Dumont1,2, Nago Humbert2, Marc-Antoine Marquis3, Michel Duval1,2, Serge Sultan1,2
1CHU Sainte-Justine, Montréal, Canada;2Université de Montréal, Montréal, Canada;3Université de Toronto, Montréal, Canada
Background/rationale or Objectives/purpose: In pediatric palliative care (PPC), information regarding the quality of life (QoL) of a patient allows to prioritise problems and to adapt the care for children. Although there is a large body of scientific literature on the QoL of patients undergoing curative treatment and survivors, very little empirical data is available on the QoL of children with advanced cancer. A preliminary study with professionals who accompanied children with advanced cancer permitted to highlight dimensions of QoL as physical, psychological and social well-being and original dimensions such as pleasure and the present moment. However, to provide an accurate understanding of QoL, it is essential to gather the perspective of children and parents. The present study aims to describe the QoL in the context of PPC in oncology according to the representation of children and parents.
Methodology or Methods: Qualitative research design was selected. Semi-structured interviews were conducted with 7 children with advanced cancer and 10 parents’ users of the hemato-oncology department. Interview data were analyzed using thematic analysis.
Impact on practice or Results: Children and parents confirmed the importance of all dimensions previously identified by professionals but reformulated them in a way more representative of their experience.
Discussion or Conclusions: Bringing together the perspectives of children, parents and professionals provides a more accurate definition of QoL in the context of PPC in oncology. Such clarification provides a framework of practice suitable for interdisciplinary communication and helps to identify the useful criteria for the development of a QoL assessment in PPC.
543 Journey of a patient with gallbladder cancer and bone metastases on initial diagnosis-- Junior doctors’ perspective on the learning of end-of-life care
Chia-Hsuan Yang1, Pai-Chen Yeh2, Yung-Chang Chen3, Kun-Yun Yeh3, Chien-Hong Lai3
1Chang-Gung Memorial Hospital Linkou, Taoyuan, Taiwan;2Hope foundation for cancer care, Taipei, Taiwan;3Chang-Gung Memorial Hospital Keelung, Keelung, Taiwan
Background/rationale or Objectives/purpose: Modern medical education, comprising six core competences, has been introduced to Taiwan after 2000. Together with psycho-oncology, that remodeled the young doctors’ learning through patients with rare and far advanced cancers.
Methodology or Methods: Beginning from case-based discussion, the juniors presented a 63 year-old male with gallbladder cancer (GBC) with peritoneal and diffuse bone metastases. Symptomatic bone metastases are rarely found on initial diagnosis of GBC. Narrative medicine led us the way to the patient's story, not only disease itself. Training of communication skills shed the light on the sensitive side of the beings. As a patient with terminal illness, his tumor had been stable for 3 months, became refractory to first line chemotherapy soon. He attempted a new immunotherapeutic agent called pembrolizumab, and failed. Pain control, symptom relief and prediction of palliative prognosis turned to be the major medical issues.
Impact on practice or Results: Incorporating psycho-oncology (PO) into medical education does not become learning burden, but fits the model of patient-centered care. We learned psycho-social aspects of the patient, feeling his emotion, family's changing life, and their grief. We also studied the role of conventional chemotherapy of gemcitabine/cisplatinum and the limitation of immunotherapy of checkpoint inhibitor. By the way, we are familiar with comprehensive care of cancer patients.
Discussion or Conclusions: PO should be an important part of oncology training, for both seniors and juniors. For we juniors, PO means holistic care rather than psychotherapy alone. Palliative medicine for juniors might consist of communication skills training, narrative medicine, symptom control, and prediction of palliative prognosis.
542 More than prescribing bathroom equipment: The role of occupational therapy in addressing psychosocial concerns at end of life
Flinders University, Adelaide, Australia; Enable Health, Calgary, Canada
Background/rationale or Objectives/purpose: This presentation will outline the valuable role the occupational therapist plays on the palliative care team. Historically, referrals to occupational therapists have been limited in palliative care services, often restricted to equipment prescription and assessment of physical function in order to engage in activities of daily living. Occupational therapists are trained to address the whole person, including the psychosocial, cognitive, physical, and environmental aspects of the individual and their support system.
Methodology or Methods: The Model of Human Occupation (MOHO) will be used to outline the role of occupational therapists in addressing priorities of people receiving palliative care services. People living with advanced cancer want to continue engaging in everyday life and relationships, and the MOHO provides a framework to address the motivation and meaning behind engagement in everyday activities in order to maintain one's identity and quality of life whilst experiencing functional decline.
Impact on practice or Results: Awareness of the role and involvement of occupational therapists on palliative care teams can improve quality of life for people living with advanced cancer. Occupational therapists address the constant changes in everyday life and relationships as cancer progresses, assisting people living with advanced cancer to adapt to continual losses and maintain their sense of self.
Discussion or Conclusions: The Model of Human Occupation guides occupational therapy practice, addressing the roles, values, interests and habits of people living with advanced cancer, as well as their physical, cognitive and psychosocial abilities and environment. Considering the important role of occupational therapists, further research is required regarding the longitudinal experience of engagement in everyday life.
518 Psychosocial Representation in Canadian Palliative Care
Maggie Robinson1, Maryam Quereshi2, Aynharan Sinnarajah3,2, Srini Chary2,3, Janet de Groot2,4, Andrea Feldstain4
1University of British Colombia Okanagan, Calgary, Canada;2University of Calgary, Calgary, Canada;3Alberta Health Services, Calgary, Canada;4Tom Baker Cancer Cnter, Calgary, Canada
Background/rationale or Objectives/purpose: Canada is an international leader in palliative care (PC), a subspecialty of medicine aiming to alleviate suffering and promote quality-of-life. PC acknowledges that interdisciplinary intervention is integral, recognizing the impact of psychological, social, spiritual sources of suffering. We became interested in the state of current integrated practice, considering the evolution of PC, psychosocial oncology, and Canadian Health care overall. Our focus herein is to describe the current representation of psychosocial care within Canadian PC.
Methodology or Methods: We recruited 14 participants who completed an 11-item questionnaire about their local PC. We recruited departmental directors across PC programs in Canadian hospitals and universities (n = 13) and members of the Canadian Society for PC Physicians (n = 1). Descriptive statistics and frequencies were used to describe reported psychosocial support.
Impact on practice or Results: Participants were from BC (n = 2), AB (n = 2), ON (n = 5), QC (n = 2), NB (n = 1), NS (n = 2). Notable gaps in service were noted in main psychosocial supports. Reports indicated that social work was available (n = 7), underrepresented (n = 4), or missing (n = 1). Psychology was mentioned as either underrepresented (n = 2), missing (n = 2), or outside consults necessary (n = 1). Spiritual care/Chaplain was noted as available (n = 1), underrepresented (n = 1), and missing (n = 1). Psychiatry was mentioned once as underrepresented (n = 1).
Discussion or Conclusions: Social work is most frequently available in PC programs. Other sources of psychosocial care are frequently under represented or lacking. We will discuss potential contributing factors and implications on patient care, team function, and availability of interventions.
506 EXPRESSIONS OF SPIRITUALITY IN FAMILY CAREGIVERS OF ADVANCED CANCER PATIENTS IN BRAZILIAN HOSPITALS
Andrea Carolina Benites, Manoel Antonio dos Santos
Faculty of Philosophy, Sciences and Letters of Ribeirao Preto at University of Sao Paulo, Ribeirão Preto, São Paulo, Brazil
Background/rationale or Objectives/purpose: Studies have highlighted the importance of spirituality and its existential aspects as essential supporting components for people dealing with serious illnesses. However, a few studies have investigated specifically the experiences and needs of family caregivers facing the imminent death of a loved one with cancer and their existential suffering. This study aims to investigate the expressions of spirituality in family caregivers of advanced cancer patients during end-of-life care in two hospitals in Brazil.
Methodology or Methods: This is a qualitative study, based on the phenomenological approach. Individual interviews were audio recorded and transcribed. The research was composed by sociodemographic data and field notes.
Impact on practice or Results: Participants were 16 family caregivers, aged 20 to 77, composed by sons, daughters, spouses, sister and nieces who accompanied the advanced cancer patient considered without possibilities of a cure in two hospitals (general and cancer centre) in Brazil. Through the phenomenological analysis the meaning units were unveiled: the resignification of existence and the meaning of life; the caregiving experience; spirituality as support and strengthening in the face of impending death; existential and spiritual distress.
Discussion or Conclusions: It was highlighted the importance of understanding the different expressions of spirituality in family caregivers of advanced cancer patients also considering the existential aspects. With the continuity of this study and follow-up of the mourning process of the family caregivers, it is hoped to improve end-of-life and bereavement care for family caregivers of advanced cancer patients in the Brazilian scenario.
Grant: #2017/26542-5, #2019/02134-0, São Paulo Research Foundation (FAPESP).
479 Feasibility of a Cognitive-Behavioral and Environmental Intervention for Sleep-Wake Difficulties in Community-Dwelling Cancer Patients Receiving Palliative Care
Marie Solange Bernatchez1, Josée Savard2,3,4
1McGill University Health Center, Montréal, Canada;2School of Psychology, Université Laval, Québec, Canada;3CHU de Québec Université Laval Research Center, Québec, Canada;4Laval University Cancer Research Center, Québec, Canada
Background/rationale or Objectives/purpose: High rates of sleep-wake difficulties have been found in patients with cancer receiving palliative care. Pharmacotherapy is the most frequently used treatment option to manage these difficulties despite numerous side effects and the absence of empirical evidence of its efficacy and innocuity in palliative care. This pilot study aimed to assess the feasibility and acceptability of a cognitive-behavioral and environmental intervention (CBT-E) to improve insomnia and hypersomnolence in patients with a poor functioning level, and to collect preliminary data on its effects.
Methodology or Methods: Six patients with cancer receiving palliative care (ECOG 2-3), who had insomnia and/or hypersomnolence (disorder or subsyndromal symptoms), received one CBT-E individual session at home. They applied the strategies for three weeks. Patients completed the Insomnia Severity Index, the Epworth Sleepiness Scale, a daily sleep diary and a 24-hour actigraphic recording (7 days) at pre- and posttreatment, in addition to a semi-structured interview (posttreatment).
Impact on practice or Results: Participants found strategies easy to apply most of the time and none was rated as impossible to use because of their health condition. However, their adherence and satisfaction toward CBT-E were highly variable. Results on the effects of CBT-E were heterogeneous, but improvements were observed in patients with a persistent insomnia disorder.
Discussion or Conclusions: The CBT-E protocol tested among this highly-selected sample was fairly well-received and suggested positive outcomes in some patients, particularly those with an insomnia complaint alone. Efforts should be pursued to adapt CBT-E and develop other non-pharmacological interventions, in order to provide an alternative to pharmacotherapy for sleep-wake difficulties in this population.
476 Experiences and needs of patients with incurable cancer regarding advance care planning: results from a national cross-sectional survey
Saskia Duijts1, Olaf Geerse2,1, Dorien Tange3, Vivian Engelen3, Saskia Duijts1,4
1University of Groningen, University Medical Center Groningen, Department of General Practice and Elderly Care Medicine, Groningen, Netherlands;2University of Groningen, University Medical Center Groningen, Department of Pulmonary Diseases and Tuberculosis, Groningen, Netherlands;3Dutch Federation of Cancer Patients Organisations, Utrecht, Netherlands;4Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health, Amsterdam Public Health research institute, Amsterdam, Netherlands
Background/rationale or Objectives/purpose: Patients faced with incurable cancer may feel abandoned or experience a lack of support from their clinician. However, studies on cancer patients’ preferences and experiences regarding the conversation, in which they learn there are no further curative treatment options, and advance care planning are scarce. We therefore aimed to explore the needs and experiences of Dutch patients with incurable cancer regarding this conversation and the level and quality of advance care planning.
Methodology or Methods: We performed a cross-sectional study among patients diagnosed with incurable cancer. Data were collected through a national online survey in the Netherlands. Descriptive analyses were performed and Pearson correlation coefficients were calculated.
Impact on practice or Results: In total, the survey was completed by 654 patients with incurable cancer. Mean age of the participants was 60 years, 58% was female, and patients were mainly diagnosed with breast cancer (22%), haematological cancer (21%) and prostate cancer (19%). Overall, these patients reported a strong need (score 8.3) for emotional support during the conversation, in which they were informed about the transition from curative treatment to palliative care. However, satisfaction with emotional support was low (score 6.4). Most patients preferred the conversation to be initiated by their health care provider (e.g., the treating clinician). The largest discrepancies between offered and needed support during patients’ last phase of life were related to psychosocial issues.
Discussion or Conclusions: Healthcare for patients with incurable cancer can possibly be improved by tailoring conversations, about the transition from curative treatment to palliative care, and advance care planning more to the needs of patients.
456 Impact of Circumstances at End-of-Life on the Adjustment of Bereaved Siblings of Children Who Died from Cancer
Ansley Kenney1, Rachel Fisher1, Perri Tutelman2, Keagan Lipak1, Maru Barrera3,4, Mary Jo Gilmer5,6, Terrah Akard5, Tammi Young-Saleme7,8, Kathryn Vannatta1,8, Cynthia Gerhardt1,8
1The Research Institute at Nationwide Children's Hospital, Columbus, OH, USA;2Dalhousie University,, Halifax, NS, Canada;3The Hospital for Sick Children, Toronto, ON, Canada;4University of Toronto, Toronto, ON, Canada;5Vanderbilt University School of Nursing, Nashville, TN, USA;6Monroe Carell Jr Children's Hospital at Vanderbilt, Nashville, TN, USA;7Nationwide Children's Hospital, Columbus, OH, USA;8The Ohio State University, Columbus, OH, USA
Background/rationale or Objectives/purpose: To examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings.
Methodology or Methods: Bereaved families (N = 84) were recruited from four sites 3-12 months after their child's death from cancer (M = 11.57 months). Eligible siblings were 8-17 years old. Families completed home assessments of grief (Hogan Inventory of Bereavement) and internalizing symptoms (CBCL).
Impact on practice or Results: Ninety percent of mothers (n = 75) anticipated their child's death (M = 81.04 ± 135.88 days). Most siblings (78%, n = 65) were aware their brother/sister was dying, primarily informed by parents (70%, n = 49). Half of deaths took place at home (52%, n = 43), with the remaining in the hospital (43%, n = 36) or other location (5%, n = 4). Thirty-five percent (n = 29) of siblings were present at death, 33% (n = 27) nearby, or 35% (n = 27) not present. Forty percent of siblings and 15% of mothers did not say goodbye (n = 33; n = 12, respectively).
Mother-reports of sibling internalizing symptoms were significantly above the normative mean t(83) = 4.44,p < .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Most circumstances surrounding death were unrelated to siblings’ internalizing and grief outcomes, except home death and sibling growth (r = -.22,p = .047). Siblings also had elevated internalizing symptoms if their parent did not say goodbye, F(2,79) = 4.08,p = .021; M = 65.5 ± 12.58).
Discussion or Conclusions: A significant portion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Place of death and saying goodbye may be important for sibling adjustment. Further work is needed to better understand predictors of adjustment among bereaved siblings to best prepare them and promote optimal outcomes.
445 Emotional distress, quality of life and complicated grief of parents whose child died of cancer: The role of gender and time elapsed since death
Émilie Dumont1,2, Claude Julie Bourque2,1, Michel Duval2,1, Carol Beaudry3, Sylvie Cantin3, Lysanne Daoust2, Audrey Stypulkowski2, Nago Humbert2,1, Antoine Payot2,1, Serge Sultan1,2
1Université de Montréal, Montréal, Canada;2CHU Sainte-Justine, Montréal, Canada;3Leucan, Montréal, Canada
Background/rationale or Objectives/purpose: A child's bereavement is a difficult period of adjustment for parents. They are more at risk of developing psychological issues than other parents. Their long-term adjustment and the differences between mothers and fathers are poorly documented. Our objectives are 1/ to describe perceived health and pathological grief of bereaved parents, and 2/ to identify the role of parent's gender and time.
Methodology or Methods: An online questionnaire was completed by 32 mothers and 14 fathers of children who died of cancer. Quality of life was measured by the Medical Outcomes Study Short Form (SF-12), emotional distress by the Brief Symptom Inventory (BSI-18) and complicated grief by the Inventory of Complicated Grief (ICG-19).
Impact on practice or Results: Some parents report emotional distress long after the child's death. No significant differences were identified between mothers and fathers on distress and quality of life. However, there is a significant difference on complicated grief scores between the two periods measured: 12 months following the child's death and 12 months prior to their participation (p
Discussion or Conclusions: Parents of children who died of cancer are particularly vulnerable. Contrary to expectations, we found no differences on quality of life and distress between mothers and fathers. However, in the first year following the child's death, mothers are significantly more likely to experience complicated grief than fathers. For practitioners, this means both the needs of fathers and mothers must be considered, even if the latter are more vulnerable during their first year of bereavement.
442 Longitudinal Understanding of Prognosis among Adolescents with Cancer
Rachel Fisher1, Ansley Kenney1, Marci Fults1, Samantha Manring1, Erin Rodriguez2, Joseph Rausch1,3, Tammi Young-Saleme3,4, Kathryn Vannatta1,3, Bruce Compas2, Cynthia Gerhardt1,3
1The Research Institute at Nationwide Children's Hospital, Columbus, OH, USA;2Vanderbilt University, Nashville, TN, USA;3The Ohio State University, Columbus, OH, USA;4Nationwide Children's Hospital, Columbus, OH, USA
Background/rationale or Objectives/purpose: We examined adolescents’ understanding of their cancer prognosis relative to their parents and oncologists, at diagnosis and 1-year follow-up.
Methodology or Methods: Families of adolescents (aged 10–17) were recruited following new diagnosis or relapse of cancer. Adolescents (Mage = 13.34, SD = 2.4) and parents completed measures at enrollment (74 adolescents, 68 mothers, 40 fathers) and 1 year (76 adolescents, 69 mothers, 35 fathers). The adolescent's oncologist reported prognosis on a 0–100% scale at enrollment (48 surveys). Analyses examined differences between informants and change over time via mixed models.
Impact on practice or Results: Oncologists reported average prognosis of 67% (+20.7). Most oncologists discussed prognosis in numerical terms with the adolescent (65%), similar to mothers (50%) and fathers (54%). Adolescent prognosis estimates were stable from diagnosis (M = 90%+11.4) to 1 year (M = 93%+17.1). Mother and father prognosis estimates were stable from diagnosis (M = 85%+17.0, M = 86% + 17.4, respectively) to 1 year (M = 86%+16.8, M = 83%+23.7). Based on discrepancy scores, adolescents reported more favorable prognosis than their oncologist (M = -25.0+20.2), but comparable to mothers (M = -3.7+14.8, M = -3.1+16.0, respectively) and fathers (M = -3.2+15.4, M = .3+21.0) at diagnosis and 1 year. Discrepancy scores were stable over time. At diagnosis, adolescent-father (p = .025) and adolescent-oncologist (p < .001) discrepancies were larger for youth with advanced than non-advanced cancer.
Discussion or Conclusions: Adolescent prognosis estimates were comparable to their parents at diagnosis and 1 year, but more favorable than oncologists. Given their optimistic estimates, improvements to prognosis education for adolescents with advanced cancer are particularly warranted.
361 End-of-Life Communication among Caregivers of Children with Cancer
Ansley Kenney1, Sima Bedoya2, Cynthia Gerhardt1,3, Tammi Young-Saleme4,3, Lori Wiener2
1The Research Institute at Nationwide Children's Hospital, Columbus, OH, USA;2National Cancer Institute, NIH, Bethesda, MD, USA;3The Ohio State University, Columbus, OH, USA;4Nationwide Children's Hospital, Columbus, OH, USA
Background/rationale or Objectives/purpose: To examine caregiver communication and preferred forms of support with children near end-of-life (EoL).
Methodology or Methods: Caregivers of children who died from cancer were recruited through a social media group. Participants (N = 139) reported on their communication and support preferences for EoL conversations.
Impact on practice or Results: Most participants were female (79%; n = 110) and white (95%; n = 132), with an average age of 49.74 ± 8.31. Deceased children ranged from 0.5–37 years old (Mage = 13.11 ± 7.3). Length of illness was < 1 to >5 years (25%, n = 34; 12%, n = 16, respectively).
Most caregivers spoke with their child about prognosis (62%; n = 139) and death (64%; n = 104). Half of children (49%; n = 132) asked about death. Older children (63% >12 years) were more likely to ask about dying, t(130) = 2.19, p = .03, which was related to conversations about prognosis, r = -.49, p < .001, and death, r = .55, p < .001. Occurrence of conversation was unrelated to caregiver age, sex, relationship, diagnosis, illness length, or remission. Most caregivers (78%; n = 99) wanted support to talk to their children. Fewer wanted providers to speak to children directly (13%; n = 17) or be present while caregivers spoke to the child (20%; n = 26). Content analysis of open-ended responses to support preferences (31%; n = 39) comprised six themes: help family prepare; provide support staff (e.g., other parents/chaplain); leave it to the family; what not to do; no opportunity (e.g., death quick, child young); and don’t know.
Discussion or Conclusions: Most caregivers discussed issues pertaining to EoL irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help them with these difficult conversations.
276 Psychological distress in breast cancer patients treated with radiotherapy: Preliminary study
Shim Shim1, Dong Sik Bae2
1Dongnam Inst; of Radiological & Medical Sciences, Busan, Korea, Republic of;2Haeundae Paik Hospital, Inje University College of Medicine, Busan, Korea, Republic of
Background/rationale or Objectives/purpose: The primary goal of the present study is to evaluate the psychological distress in breast cancerpatients receiving radiotherapy (RT). Additionally, this study will examine the variables, including the risk factors, that affect the development of distress in this group of patients.
Methodology or Methods: The present study will include patients who have undergone surgery for primary breast cancer without metastasis/recurrence and who are scheduled for adjuvant RT. The primary outcome measure was the prevalence of psychiatric comorbidities according to the MINI (Mini-international neuropsychiatric interview) at baseline and RT completion. The secondary outcome measure was the total score of HADS (Hospital anxiety and depression scale) at baseline and RT completion.
Impact on practice or Results: Participants are currently being recruited for this study, which has an estimated completion date of December 2019. Because the stage of the disease can have a major influence on treatment decisions, we will analyze data from patients with early-stage breast cancer (stages 0–I) including ductal carcinoma in situ and advanced breast cancer without metastasis (stage II-III), separately.
Of the 31 patients included in the final analysis, the prevalence of psychiatric comorbidity at RT completion (P = 0.258) and total score of HADS over time (P = 0.087) in patients with early stage (N = 17) were not significantly different compared to advanced stage group (N = 14). These results were not significantly different between the groups classifed on the basis of chemotherapy history (P > 0.999, P = 0.397). The risk factors of psychiatric comorbidities after RT was related to age(P = 0.085, 95% CI [0.949–1.380]), LOT (P = 0.047, 95% CI [0.720–0.998]) and menopause (P = 0.028, 95% CI [1.578 -3053.279].
Discussion or Conclusions: These findings will contribute to our understanding of the psychological effects undergoing RT. However, due to the small number of participants, psychological effects of RT in patients with breast cancer remains to be clarified.
216 Dare to Care: patients with advanced cancer and their informal caregivers want personal well-organized care
Janneke van Roij1,2, Bibi de Zeeuw1, Myrte Zijlstra1,3, Niels Claessens4, Natasja Raijmakers1, Lonneke van de Poll-Franse1,2,5, Linda Brom1
1The Netherlands Comprehensive Cancer Organization, Utrecht, Netherlands;2Tilburg University, Tilburg, Netherlands;3Maxima Medical Centre, Eindhoven, Netherlands;4Rijnstate, Arnhem, Netherlands;5The Netherlands Cancer Institute, Amsterdam, Netherlands
Background/rationale or Objectives/purpose: Palliative care is focussed on improving quality of life of patients with a life-threatening illness and their informal caregivers. It remains unclear what good quality of care entails for patients with advanced cancer and their informal caregivers. Therefore, the aim of this study is to explore the essential aspects of palliative care according to patients with advanced cancer and their informal caregivers.
Methodology or Methods: Seven focus groups and seven in-depth semi-structured interviews with 18 patients suffering from advanced cancer and 15 informal caregivers were conducted in the Netherlands. All interviews were audiotaped, transcribed verbatim, and open coded using a thematic analysis approach.
Impact on practice or Results: Two essential aspects of quality of care from the patients’ and informal caregivers’ perspective arose: ‘communication and relation’ and ‘organization of care’. Regarding communication and relation, patients and informal caregivers found it essential that health care professionals were personally engaged and provided support and compassion. Regarding organization of care, patients and informal caregivers expressed the importance of well-organized logistics tailored to needs of the receiver. Patients and informal caregivers expressed the importance of supportive care being offered multiple times during the disease trajectory.
Discussion or Conclusions: This study shows that it is important for patients with advanced cancer and their informal caregivers that health care professionals are personally engaged and care is patient-centred organised and coordinated. To optimise quality of care, it is of utmost importance that health care professionals have good communication skills and explore the patients’ and informal caregivers’ unique experiences, needs, preferences, and expectations.
199 Fear and Anxiety Regarding Cancer Recurrence, Progression, and Death: Unaddressed Concerns for Patients with Primary Brain Tumor
Autumn Lanoye, Farah Aslanzadeh, Sarah Braun, Mariya Husain, Ashlee Loughan
Virginia Commonwealth University, Richmond, USA
Background/rationale or Objectives/purpose: Death anxiety and fear of progression/recurrence is widespread among cancer survivors. Research has explored prevalence rates, impact on quality of life, and treatment approaches across a variety of cancers; however, these issues appear to have been largely overlooked among patients with primary brain tumors (PBT). Thus, we conducted a systematic literature review examining how neuro-oncology has been represented in the extant literature regarding death anxiety and fear of cancer progression/recurrence.
Methodology or Methods: A systematic literature review was conducted across PubMed, CINAHL, and PsycINFO using pre-specified search terms. Studies were included if they were peer-reviewed, used quantitative methods, limited their sample to cancer populations, provided a breakdown of specific cancer diagnoses (if mixed sample), and assessed fear/anxiety specific to cancer progression, recurrence, and/or death.
Impact on practice or Results: Following an initial screen of title/abstract for relevance, 1561 full-text articles were reviewed and considered for inclusion; 336 studies met full criteria and were included for analysis. Of the 134,392 cancer patients represented in these samples, only 0.17% had a diagnosis of PBT. Death anxiety and fear of progression/recurrence was most commonly assessed in breast, colorectal, prostate, and gynecological cancers.
Discussion or Conclusions: Assessment of anxiety regarding disease progression, recurrence, and death is extremely underrepresented within the brain tumor population—due in large part to many studies specifically excluding participants and patients with central nervous system disorders. This is of particular concern given that this gap in knowledge prevents clinicians from assessing risk and providing evidence-based treatment to address existential concerns in the neuro-oncology setting.
194 A case of terminal breast cancer patient who experienced peaceful days by the co-operative palliative care with local hospital and university hospital
Tokuzo Matsui1, Kunihiko Hiraoka2, Hisato Matsunaga3
1Hyogo University of Health Sciences, Kobe, Japan;2Amagasaki Chuo Hosipital, Amagasaki, Japan;3Hyogo Medical College, Nishinomiya, Japan
Background/rationale or Objectives/purpose: In Japan, a lot of cancer patients are visiting a local hospital rather than a regional cancer cooperation hospital because many local hospitals are not authorized such certification. However, lack of psycho-oncologist in local hospital makes it difficult to give appropriate support for patients having psychiatric problems. We propose how to incorporat patient's request to stay home and to visit local hospital.
Methodology or Methods: The patient was 65 years old male having breast cancer with liver metastases. She has been followed by a local surgeon more than 5 years whom she has built a firm relationship. During her monthly follow up, she suddenly got manic state and began wasting her money. Her visiting hospital did not have psychiatric department, so she was referred to my university hospital.
Impact on practice or Results: Risperidone 2 mg/day has been prescribed. Her YMRS score was improved from 24/60 at her first visit to 4/60 at her second visit. Risperidone was effective with rapid efficacy with low doses. The differential diagnosis causing for this manic state are 1)metastatic brain tumors, 2)side effect of chemotherapy, 3endogenous psychosis. However, she has passed away peacefully because of respiratory failure.
Discussion or Conclusions: There are two important points. First, the patient wanted to stay where she has lived for a long time and to have her primary doctor to look at her to the last. Appropriate joint medical care enabled her to have peaceful days. Second, differential diagnosis was difficult. Within limited information, careful consideration of history and data enabled us to make proper diagnosis and treatment.
188 Implementation of Managing Cancer and Living Meaningfully (CALM) in Dutch Cancer Care settings
Froukje de Vries1,2, Emma Hafkamp2, Eline Aukema3, An Reyners4, Carmine Malfitano5, Gary Rodin5, Lonneke van de Poll2,6
1Department of Psychiatry, Antoni van Leeuwenhoek, Netherlands Cancer Institute, Amsterdam, Netherlands;2Center for Quality of Life, Antoni van Leeuwenhoek, Netherlands Cancer Institute, Amsterdam, Netherlands;3Ingeborg Douwes Center, psycho-oncology center, Amsterdam, Netherlands;44 Department of Medical Oncology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands;5Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, University Health Network, Toronto, Canada;6Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, Netherlands
Background/rationale or Objectives/purpose: Many interventions in psychosocial oncology are not implemented in daily practice, despite scientific data supporting their effectiveness. Managing Cancer and Living Meaningfully (CALM) is a brief, evidence-based intervention tailored for patients with advanced cancer and their loved ones. Research on the effectiveness of CALM in different cultural settings is currently underway as part of a large Global Program.
Methodology or Methods: We are currently conducting a multi-center, intervention-only, mixed-method pilot study assessing the applicability, feasibility, and preliminary effectiveness of CALM in the Dutch setting. Additional data is being collected to assess sustainability of the program post-study. Professionals at three cancer care settings in the Netherlands have been trained in the delivery of CALM. A total of 54 patients will be recruited in the study, including a subgroup of 20 patients who have a positive response on immunotherapy, which typically results in longer but uncertain life expectancy.
Impact on practice or Results: Positive impact on practice so far includes: involvement of physicians in psychosocial care, development of a common language and a standardized treatment across disciplines, improved use of peer supervision, and new national and international collaborations. Quantitative baseline data will be presented.
Discussion or Conclusions: Implementing a psychotherapeutic intervention in the context of research has demonstrated benefits such as increased rigor, dissemination of findings in the clinical and the scientific community, and the simultaneous collection of evidence during implementation. To ensure sustainability of the program post-study it is necessary to transition the delivery of CALM from research to routine clinical care.
179 Fear of Dying in Brain Tumor Patients: Prevalence and Association with Depression
Audrey Ann Lois Villanueva1, Sarah Ellen Braun1,2, Ashlee R. Loughan1
1Massey Cancer Center & Virginia Commonwealth University, Department of Neurology, Division of Neuro-Oncology, Richmond, USA;2Virginia Commonwealth University, Department of Psychology, Richmond, USA
Background/rationale or Objectives/purpose: Understanding the factors that impede quality of life (QoL) becomes important when given a primary brain tumor (PBT) diagnosis due to high disease burden and treatment severity. Psychological distress may arise, which often includes fear of dying. This study investigated the prevalence of fear of dying in neuro-oncology and its relationship with symptoms of depression.
Methodology or Methods: A total of 102 PBT patients (age range = 19–82; grades I-IV) receiving care from a National Cancer Institute cancer center were surveyed using the Beck Anxiety Inventory (BAI) and Beck Depression Inventory – Second Edition (BDI-II). A single-item question from the BAI measured fear of dying. Descriptive analyses, t-tests, and Pearson correlations were conducted. Age, gender, and tumor grade were also investigated as correlates.
Impact on practice or Results: Thirty-one percent (n = 32) of PBT patients endorsed fear of dying on the BAI. There was a positive correlation between fear of dying severity and depression symptomology (BDI-II; r = 0.33, p < 0.01). There was also a difference in depression scores (BDI-II) for those who endorsed fear (M = 16.7; SD = 11.1) when compared to those who did not (M = 12.6; SD = 8.1); t(100) = 2.10, p = .04. There was no difference in age, gender or tumor grade (p > .05).
Discussion or Conclusions: Fear of dying affected approximately one third of the PBT patients in this study. Patients who reported a fear of dying had higher levels of depressive symptomology than those who did not. Early identification of fear of dying may help improve QoL, existential support, and palliative care for PBT patients.
118 The association of preloss and postloss grief reaction in a sample of Chinese cancer family members
Chih-Tao Cheng1,2, Wan-Lin Lee3, Yi-Chen Hou1, Shu Kao1, Yaw-Sheng Lin4
1Koo Foundation Sun Yat-Sen Cancer Center, Taipei, Taiwan;2National Defense University, Taipei, Taiwan;3National Chengchi University, Taipei, Taiwan;4National Taiwan University, Taipei, Taiwan
Background/rationale or Objectives/purpose: Limited studies tracked the grief process starting from preloss period. We aim to explore and test the association of grief symptoms of cancer family members prior to and after the death.
Methodology or Methods: Between 2016 and 2018, we routinely administered Hogan grief reaction checklist along with other questionnaires in 163 family members of terminal cancer patients in a cancer center in Taiwan. Among them, we sent out a follow-up questionnaire to 51 family members, who were deemed appropriate, at 6 months after the death. A final sample of 36 returned the completed questionnaire.
Impact on practice or Results: The process of sample selection will be illustrated in detail in the presentation. The final sample of 36 samples were not statistically different in their age, gender, education level, religion, relationship to the deceased, and social support level. However, their number of previous loss and the duration of their care for the deceased were significantly longer than the family members not included. There's a moderate association between domains of grief reactions, such as despair, disorganized, panic, hostility, and hopelessness. However, there's low or insignificant association between preloss grief reactions and postloss ones.
Discussion or Conclusions: There's no significant association in preloss grief reaction and postloss ones. Potential bias in patient selection and the culture and grief reaction in the population studied will be explored. Other potential predicators for postloss grief will be discussed.
103 Death Anxiety: Is This a Concern in Primary Brain Tumor Patients and their Caregivers?
Mariya Husain1,2, Audrey Ann Lois Villanueva2, Rachel L. Boutté2, Sarah Ellen Braun2, Ashlee R. Loughan2,1
1VCU School of Medicine, Richmond, USA;2VCU Massey Cancer Center, Richmond, USA
Background/rationale or Objectives/purpose: A terminal cancer diagnosis can be devastating and may cause an increase in death awareness and anxiety, negatively affecting quality of life (QoL) and overall health outcomes. One oncology population which may be particularly vulnerable, yet to-date uninvestigated, is primary brain tumor (PBT) patients and their caregivers, especially given the current lack of curative treatment options.
Methodology or Methods: Eighty-one PBT patients (age range 20–86 years) and 53 caregivers from a National Cancer Institute-designated cancer center were included. Dyads completed validated questionnaires including Templer's Death Anxiety Scale (DAS), Death Distress Scale (DDS), Patient Health Questionnaire (PHQ9), and Generalized Anxiety Disorder (GAD7). Demographics and tumor characteristics were also investigated as correlates. Descriptive analyses, t-tests, chi-square, and Pearson correlations were conducted.
Impact on practice or Results: Thirty-five percent (n = 28) of PBT patients endorsed death anxiety. They were significantly younger, three times more likely to be female, twice as likely to have a low-grade tumor and demonstrated higher scores in emotional distress (p < .05). Forty-seven percent (n = 25) of caregivers endorsed death anxiety. Caregivers’ death anxiety severity was affected by patients’ tumor grade (p < .05; I<II>III) and correlated with caregiver psychological distress (p<.01), yet not with patient distress symptomology (p > .05).
Discussion or Conclusions: More than one-third of PBT patients and almost half of caregivers endorsed death anxiety. Several demographic variables were related to death anxiety. Considering this is the first study on death anxiety in neuro-oncology, these rates suggest a profound need for supportive care in this population. These results encourage development and investigation of tailored end-of-life interventions for PBT patients and their loved ones.
61 Palliative Care Issues, Recommendations and Strategies Targeting Adolescents and Young Adults with Cancer
Team Shan Breast Cancer Awareness for Young Women (Team Shan), Huntsville, Canada
Background/rationale or Objectives/purpose: Every year in Canada, about 8,000 adolescents and young adults (AYA) between 15 and 39 years of age are diagnosed with cancer. Some will survive their cancer journey and others will not. For over a decade, the gaps in palliative care for the AYA cancer sub population have been identified and recommendations made to address their unique palliative care needs.
The Team Shan Breast Cancer Awareness for Young Women (Team Shan) presentation will review AYA palliative care issues and current Canadian efforts to both understand and address these needs. Lived experiences and emerging strategies to improve the palliative care experience for AYA with cancer or other life threatening illness, their family, friends and health care providers will be highlighted.
Methodology or Methods: Lorna Larsen, Team Shan President lived the palliative care experience with her daughter, Shanna, who passed away from breast cancer at the age of 24.
Team Shan reviewed published palliative care needs and recommendations for AYA with cancer. Team Shan worked with community partners at both the provincial and national level to make a difference for AYA with cancer following in Shan's footsteps. Recent community and clinical efforts were also reviewed.
Impact on practice or Results: Emerging strategies to address palliative care needs for AYA with cancer have the potential to close identified AYA palliative care gaps.
Discussion or Conclusions: Historical context on palliative care issues and recommendations for AYA with cancer has been identified. Promising community and clinical efforts are making a difference for the AYA population and provide hope for future AYA palliative care best practice..
35 Changes in death preparedness and its impacts on psychological distress and quality of life for terminally ill cancer patients in their last year of life
Siew Tzuh (Stephanie) Tang
Chang Gung University School of Nursing, Tao-Yuan, Taiwan
Background/rationale or Objectives/purpose: Background: Death preparedness, a distinct but related concept to prognostic awareness (PA), allows patients to prepare, practically, psychologically, and interpersonally, for death. However, death preparedness has rarely been studied and primarily with insufficient cross-sectional designs.
Objective: To explore the course of changes in death preparedness and evaluate its impacts on severe anxiety symptoms, severe depressive symptoms, and quality of life (QOL) in cancer patients’ last year.
Methodology or Methods: Methods: For this prospective, longitudinal study, we consecutively recruited 277 terminally ill cancer patients. The course of changes in death preparedness and its impacts on severe anxiety symptoms, severe depressive symptoms, and QOL were examined by univariate and multivariate generalized estimating equation analyses, respectively.
Impact on practice or Results: Results: The prevalence of death preparedness was 54.43%-65.85% in the last year, with a significant decrease only 91–180 vs. 181–365 days before death (odds ratio [OR: 95% CI] = 0.67: 0.47, 0.97]). Death preparedness was associated with a lower likelihood of severe anxiety symptoms (adjusted OR [AOR: 95% CI] = [0.47: 0.27, 0.79]) and severe depressive symptoms (0.61 [0.39, 0.95]), but not with QOL (β [95% CI] = 0.49 [-2.13, 3.11]). However, participants with accurate PA were more likely to experience severe depressive symptoms (2.63 [1.63, 4.25]).
Discussion or Conclusions: Conclusions: Death preparedness remained largely stable in cancer patients’ last year and was significantly associated with their psychological distress at end of life (EOL). Healthcare professionals should not only cultivate cancer patients’ accurate PA earlier in their terminal-illness trajectory to facilitate high-quality EOL care, but also promote their death preparedness to improve their psychological well-being at EOL.
16 Cancer Patients’ Concordance between Preferred and Received Life-Sustaining Treatment States Is Facilitated by Accurate Prognostic Awareness, Better Quality of Life, and More Depressive Symptoms, but Impeded by More Anxiety Symptoms
Siew Tzuh Tang1, Fur-Hsing Wen2, Jen-Shi Chen3, Wen-Chi Chou3
1Chang Gung University, School of Nursing, Tao-Yuan, Taiwan;2Department of International Business, Soochow University, Taipei, Taiwan;3Division of Hematology-Oncology, Chang Gung Memorial Hospital at Linkou, Tao-Yuan, Taiwan
Background/rationale or Objectives/purpose: Purpose: To examine the effectiveness of an advance care planning (ACP) intervention in facilitating concordance between cancer patients’ preferred and received life-sustaining treatment (LST) states/patterns and to explore modifiable factors facilitating or impeding such concordance.
Methodology or Methods: Methods: Terminally ill cancer patients (N = 460) were randomly assigned 1:1 to the experimental and control arms of a randomized clinical trial, with 430 deceased participants comprising the final sample. States of preferred LSTs (cardiopulmonary resuscitation, intensive care unit care, chest compression, intubation with mechanical ventilation, intravenous nutrition, and nasogastric tube feeding) and LSTs received in the last month were examined by hidden Markov modeling. Concordance and its modifiable predictors were measured/evaluated by percentage/kappa and multivariate logistic regression, respectively.
Impact on practice or Results: Results: We identified three LST-preference states (uniformly preferring LSTs, rejecting LSTs except intravenous nutrition support, and mixed LST preferences) and three received LST states (uniformly receiving LSTs, received intravenous nutrition only, and selectively receiving LSTs). Concordance was slightly but not significantly higher in the experimental than the control arm (62.14% vs 61.95%; kappa [95% CI]:0.126 [0.032, 0.221] vs 0.050 [-0.028, 0.128]). Preferred-received LST state concordance was facilitated by accurate prognostic awareness, better quality of life (QOL), and more depressive symptoms, whereas concordance was impeded by more anxiety symptoms.
Discussion or Conclusions: Conclusions: Our ACP intervention did not facilitate concordance between terminally ill cancer patients’ preferred and received LST states, but patient value-concordant end-of-life care may be facilitated by interventions to cultivate accurate prognostic awareness, improve QOL, support depressive patients, and clarify anxious patients’ over-expectations of LST efficacy.
M. Patient-oriented research
767 Reintegration Following Non-CNS Cancer – Can we Apply Methods from Clinical Neuropsychology?
Limor Sharoni1, Ayala Bloch2
1The National Institute for the Rehabilitation of the Brain Injured, Tel Aviv, Israel.2Department of Psychology, Ariel University, Tel Aviv, Israel
Background/rationale or Objectives/purpose: The literature on cancer-related cognitive impairment (CRCI) suggests that community-based neuropsychological rehabilitation tools can be useful in reintegrating survivors of non-CNS cancer. The Sulam (“Ladder”) Program was developed to offer non-CNS cancer survivors neuropsychological treatment with a vocational focus. The innovative program integrates different content areas, including treatment of cognitive deficits, vocational rehabilitation for individuals experiencing cognitive and emotional changes, and holistic psychosocial intervention.
Methodology or Methods: The program is grounded in intervention for acquired brain injury and adapted to address the specific needs of cancer survivors in three primary domains: cognitive, emotional, and vocational. It supports participants in returning to work, in accordance with their post-cancer abilities. In six months, it includes a wide range of interventions, among them: individual and group psychotherapy, CRCI-adapted groups, yoga, sexuality and nutrition groups, job/academic consultation and placement.
Impact on practice or Results: Results of our pilot group showed that all participants, who had lost jobs prior to beginning the program, initially had minor but significant deficits in attention, executive functions, and memory, and experienced changes in functioning, mood, and behavior. Upon program completion, there were improvements in these measures, alongside high rates of reintegration into employment or academic programs.
Discussion or Conclusions: Beyond vocational success, preliminary results show that most participants experienced improvements in emotional and cognitive functioning, supporting the need for and potential benefit of post-cancer neuropsychological rehabilitation day programs with a vocational focus. Adherence rates and initial observational data are encouraging and suggest value in the group setting that goes beyond individual therapy.
749 Evaluating the impact of patient and public involvement (PPI) on the life after prostate cancer diagnosis study (LAPCD)
Jo Brett1, Hugh Butcher2, John Keenan2, Darryl Catton2, Zoe Davey1, Fiona Matley1, Adam Glaser2, Anna Gavin3
1Oxford Brookes University, Oxford, United Kingdom;2University of Leeds, Leeds, United Kingdom;3Queen's University Belfast, Belfast, United Kingdom
Background/rationale or Objectives/purpose: While the PPI evidence base has expanded significantly over the last decade, the reporting of PPI has often been partial. Inconsistent reporting creates a fragmented evidence base making it difficult to draw together our collective understanding of what works, for whom, why and in what context. We set out to evaluate and report a novel method of PPI in a large national study in the UK exploring life after a prostate cancer diagnosis, where PPI was integrated into the study as an independent work-stream
Methodology or Methods: A link to an online survey was emailed to all members of the research team (n = 38), including researchers, service users, funders and clinical advisory group, in 2018 at the end of this 3 year study. Semi-structured interviews were conducted with 16 members of the research team. Survey results were reported using descriptive statistics and interviews were analysed with thematic analysis using the framework approach. Results were reported using the GRIPP2 guidelines
Impact on practice or Results: Embedding PPI into the study as an independent work-stream was identified as a particular strength, and benefitted from effective organisation and leadership. Research team members recognised that a supportive environment that valued PPI was fostered which helped sustain engagement. Case studies of PPI methods used that showed impact on the study are reported
Discussion or Conclusions: Providing PPI as an independent funded work-stream helped provide the contextual and process factors important to have a real impact on the LAPCD study
730 Patients’ Self-Reported Pain, Pain Interference and Quality of Life in Patients with a Brain Tumor Attending Neurology Clinics
Andrea Maria Laizner1,2,3, Antonietta Vitale1, Rosalba Sourial1, Diane Lowden2, Mathieu Roland Jetté3, Nicole Drummond3, Claire Nehmé4
1McGill University Health Centre, Montreal, Canada;2McGill University, Montreal, Canada;3Research Institute of the MUHC, Montreal, Canada;4Hôpital Sacré Coeur, Montreal, Canada
Background/rationale or Objectives/purpose: PURPOSE. Studies report neurology outpatients experience pain that interferes with function and quality of life. The inconsistent use of standardized questionnaires makes bench-marking difficult for improving care quality. This study hoped to fill the gap by examining pain, pain interference and quality of life in out-patients of neurological clinics in a quaternary health care center, using the same questionnaires.
Methodology or Methods: METHODS. Quantitative descriptive study design was used to recruit a convenience sample of neurology patients. They completed self-report questionnaires about socio-demographic information, pain experience (BPI-SF), quality of life (EQ-5D) and pain self-efficacy (PSEQ_2).
Impact on practice or Results: RESULTS. 409 patients participated, including 40 diagnosed with a brain tumor. Of the patients with a brain tumor, 56.4% female, mean age 52 years, 77.5% college or university education and 58% married. Thirty percent brain tumor patients reported experiencing pain in the last 24 hours; 72.7% reported “Pain Now” at 4 or above on 0 to 10 scale. There was variation in mean pain (“Pain Now” = 4.9; “Worst Pain” = 5.8; “Least Pain” = 3.6). Of concern, 63.6% reported having pain for more than 3 months.
Only 40% reported they had all the information they needed to manage their pain. Pain interfered with work and living a normal lifestyle. Mean pain interference (BPI) was 5.2 on a scale from 0 to 10. Brain tumor patients rated their heath today quite high compared to other neurology patients.
Discussion or Conclusions: Results indicate importance of asking patients about pain experience, quality of life and need for information to manage their pain.
702 The feasibility of measuring physical function and patient-reported outcomes across the surgical timeline in head and neck cancer
Julia Daun1, Rosemary Twomey1, Joseph Dort2,3, Lauren Capozzi1,4, Trafford Crump3,5, George Francis2,6, T. Wayne Matthews3, Shamir Chandarana3, Rob Hart3, Christiaan Schrag3, Jennifer Matthews3, C. David McKenzie3, Harold Lau7, S. Nicole Culos-Reed1,2,6
1Faculty of Kinesiology, University of Calgary, Calgary, Canada;2Department of Oncology, Cumming School of Medicine, University of Calgary & Tom Baker Cancer Centre, Calgary, Canada;3Department of Surgery, Cumming School of Medicine, University of Calgary & Tom Baker Cancer Centre, Calgary, Canada;4Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary,, Calgary, Canada;5Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Canada;6Department of Psychosocial Resources, Tom Baker Cancer Centre, Alberta Health Services, Calgary, Canada;7Department of Surgery, Cumming School of Medicine, University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: Head and neck cancer (HNC) is the sixth most commonly diagnosed cancer world-wide. Physical activity enhances physical and psychosocial functioning of HNC patients. All HNC patients undergoing major surgery are managed by a multidisciplinary team that uses a postoperative care pathway; however, the current established protocols do not target the preoperative physical condition patients. Prehabilitation is an intervention designed to use the waiting period before surgery to optimize the patient's condition and may be a complementary addition to existing perioperative protocols.
Methodology or Methods: In phase I, using a mixed-methodological approach, a prospective cohort study will: 1) assess the feasibility of measuring physical functioning and patient-reported outcomes of surgical HNC patients across their clinical timelines; and 2) understand how exercise fits into the care pathway, by using a patient-oriented framework to conduct semi-structured interviews with a subset of these patients. Staff will also be interviewed to provide feedback on exercise prehabilitation logistics for the clinic setting. In phase II, an exercise prehabilitation intervention will be implemented, with feasibility as the primary outcome.
Impact on practice or Results: Data collection will take place between May and December 2019.
Discussion or Conclusions: This project aims to positively impact the quality of life of HNC patients as well as provide an innovative model for uptake by other tumour groups and clinical sites, for the implementation of exercise into standard cancer care.
633 Changes in distress through 2 year survivorship in a sample of autologous and allogeneic hematopoietic cell transplantation recipients: Opportunities to target screening for distress administration and enhance whole patient care?
Jennifer C. Pink1,2, Sara Beattie1,2, A. L. Alawami2, Katherine-Ann L. Piedalue2, Linda E. Carlson1,2, Barry D. Bultz1,2, Andrew Daly1,2, Naree Ager1, Laura E. Labelle1,2
1Tom Baker Cancer Centre, Calgary, Canada;2University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: Hematopoietic cell transplantation (HCT) recipients’ distress predicts negative physical and psychosocial outcomes. Routinely screening for distress (SFD) allows early symptom identification and interventions to improve outcomes. The policy at the Alberta Blood and Marrow Transplant Program (ABMTP) at the Tom Baker Cancer Centre (TBCC) is for SFD administration at each clinic visit. However, patients make many visits during the intensive treatment period, so this high frequency of administration may lead to survey fatigue, which may inadvertently decrease its clinical utility. To help identify clinically-indicated time points for SFD administration and ultimately enhance its clinical utility, this retrospective longitudinal study seeks to: 1) describe changes in distress, and; 2) examine associations between demographic/medical variables and changes in distress in a sample of HCT recipients from pre-transplant through 2 year survivorship.
Methodology or Methods: SFD forms (Edmonton Symptom Assessment Scale and Canadian Problem Checklist) were collected from the outpatient electronic medical records of 327 autologous and 237 allogenic HCT recipients in the ABMTP from 2013–2016. Patient medical and demographic variables were imported from the Canadian Blood and Marrow Transplant Group's database.
Impact on practice or Results: Hierarchical linear modelling will be used to examine changes in SFD scores and to test if demographic and medical variables predict changes in SFD scores over the HCT trajectory. Additionally, data for autologous and allogenic HCT recipients will be analyzed separately and compared.
Discussion or Conclusions: Our results will provide a better appreciation of the HCT recipients’ experience of distress across the transplant trajectory and inform guidelines for clinical utilization of SFD.
620 Distress thermometer and cardiotoxicity in patients with middle to lower third esophageal cancer receiving chemoradiotherapy
Ning-I Yang1,2, Pai-Chen Yeh3,2, Tzu-Ping Chen4,2, Din-Li Tsan5,2, Chin-Chan Lee6,2, Li-Tang Kuo1,2, Chao-Hung Wang1,2, Chien-Hong Lai3,2
1Division of Cardiology, Department of Internal Medicine, Chang Gung Memorial Hospital, Keelung, Taiwan;2Chang Gung University College of Medicine, Taoyuan, Taiwan;3Division of Oncology, Department of Internal Medicine, Chang Gung Memorial Hospital, Keelung, Taiwan;4Division of Cardiothoracic Surgery, Department of Surgery, Chang Gung Memorial Hospital, Keelung, Taiwan;5Department of Nuclear Medicine, Chang Gung Memorial Hospital Linkuol, Taoyuan, Taiwan;6Division of Nephrology, Department of Internal Medicine, Chang Gung Memorial Hospital, Keelung, Taiwan
Background/rationale or Objectives/purpose: Esophageal cancer (EC) ranks the 8th of cancer deaths in Taiwan. Concurrent chemoradiotherapy (CCRT) is the main treatment with cardiac toxicity a major complication. There is close proximity between the radiation field and heart in middle to lower third (M-L/3) EC. We aim to explore whether there is correlation among CCRT, cardiotoxicity and emotional distress.
Methodology or Methods: We retrospectively surveyed M-L/3 EC patients receiving CCRT during Jan 2017 and Aug 2019. All patients received echocardiography exam. Emotional distress was assessed by the performance score, pain score and distress score.
Impact on practice or Results: A total of 16 patients were enrolled, 13 were male, average age was 57 years, mean body mass index was 21.58 kg/m2, 13 were smokers and 10 drank alcohol. Mean left ventricle (LV) ejection fraction was 72.3%, LV diastolic dimension was 43.9 mm, LV systolic dimension was 25.7 mm and LV mass was 81.2 mg. Emotional distress scores increased following treatment; mean performance score 0.7 increased to 1.0, mean pain score 2.0 increased to 3.6 and mean distress score 3.5 increased to 4.7. Patients were then divided into 2 groups according to total emotional assessment scores post treatment, with 7 patients scoring > 4 and 9 patients ≤ 4. Only female sex was found to be associated with higher emotional distress scores.
Discussion or Conclusions: Echocardiography parameters were not found to be associated with increased emotional distress in M-L/3 EC patients receiving CCRT. Further studies with larger sample size and alternate myocardial ischemia assessments may provide further insight as to whether or not cardiac toxicity contributes to emotional distress.
608 Understanding the impact of having a genetic test result reclassified
Rajneesh Kaur1, Bettina Meiser1, Laura Marie Wedd2, Nicola Poplawski3, Nicholas Pachter4, Rachel Susman5, Margaret Gleeson6
1UNSW Sydney, Sydney, Australia;2University of Sydney, Sydney, Australia;3Royal Adelaide Hospital, Adelaide, Australia;4King Edward Memorial Hospital, Subiaco, Australia;5Royal Brisbane and Women's Hospital, Herston, Australia;6Hunter Family Cancer Service, Waratah, Australia
Background/rationale or Objectives/purpose: To explore the psychosocial impact of a reclassification of a genetic test result in patients who have had the pathogenicity of their BRCA1, BRCA2 or Lynch syndrome related genetic test result reclassified.
Methodology or Methods: We undertook semi-structured in-depth interviews with 12 patients who have experienced a reclassification of their risk with either their risk upgraded or downgraded. The interviews encompassed issues such as the impact of the reclassification on self, family, cancer-related worry and risk perception. The recruitment will continue till data saturation is achieved. Thematic analysis of the interview data was undertaken.
Impact on practice or Results:
The participants demonstrated contrasting responses to their reclassification. Where the result was upgraded to pathogenic; the reclassification was mostly met with acceptance. In contrast, some of the participants whose risk was downgraded conveyed disbelief and shock. A few participants had limited recall of the results. Participants conceptualized their reclassified results differently and sought additional information to varying degrees. None of the participant reported negative views of genetic testing after receiving their reclassification. Participants indicated a preference for being informed of the possibility of a reclassification at the time of initial genetic testing and indicated their preference for face to face consultation to receive the reclassified results.
Discussion or Conclusions: The findings from this study provide insights into the unique experiences of those who have experienced a BRCA1/2 or Lynch Syndrome gene variant reclassification. Given the increased uptake of genetic testing and the possibility of a reclassification over time, understanding the impact of a reclassification is an important topic for future research.
601 Experiences and unmet needs of adult cancer survivors in transitions
University of Toronto, Toronto, Canada
Background/rationale or Objectives/purpose: To report on the experiences of adult cancer survivors as they transition from end of cancer treatment to follow-up care and to discuss how we can best develop actionable recommendations that would ensure a smoother transition from treatment to survivorship.
Methodology or Methods: A national survey of cancer survivors (1 to 3 years post treatment) was conducted to identify their unmet needs and experiences with follow-up care. In collaboration with ten Canadian provinces, samples were drawn from cancer registries and questionnaire packages were distributed by mail. Surveys were available in English and French and completed either on paper or online. Data reported herein are for the adult group.
Impact on practice or Results: 40,790 surveys were mailed out with 12,929 surveys completed and returned by adults 30 years and older (32% response rate). Fifty-one percent of this sample were females, 60% were 65 years or older, and 77% had not experienced metastatic disease. Eighty-seven percent reported at least one physical concern, 78% identified at least one emotional concern, and 44% experienced at least one practical concern. For those who sought help, a third of the sample reported either having difficulty or not obtaining assistance for those needs.
Discussion or Conclusions: The findings indicate that significant proportions of adult survivors report concerns and unmet needs about physical, emotional, and practical issues. Strategies to address these care gaps are desperately needed if we are to truly provide person-centered care throughout the cancer trajectory.
531 Investigation and Analysis of Symptom Cluster in Hospitalized Cancer Patients
Xiaohong Liu1, Fei Tong2, Ran Zou1, Hui Yang1, Xufen Huang1, Minni Wen3, Wangnian Peng1, lili Yi4, Shuiyuan Xiao5, Nianjun Ren2, Feng Liu1, Lemeng Zhang1
1Hunan Cancer Hospital/The Affiliated Cancer Hosptial of Xiangya School of Medicine, CSU, changsha, China;2Hunan Cancer Hospital/The Affiliated Cancer Hosptial of Xiangya School of Medicine, CSU, Changsha, China;3Hunan Cancer Hospital/The Affiliated Cancer Hosptial of Xiangya School of Medicine, CSU, Changsha, China;4Hunan Cancer Hospital/The Affiliated Cancer Hosptial of Xiangya School of Medicine, CSU, changsha, China;5Xiangya School of Public Health, CSU, changsha, China
Background/rationale or Objectives/purpose: The purpose of this study was to obtain the occurrence and distribution characteristics of symptoms an clusters by analyzing the symptom survey data of hospitalized cancer patients, and also to pay high attention to suicidal ideation patients.
Methodology or Methods: A total of 600 hospitalized cancer patients were randomly selected from different clinical department in Hunan Cancer Hospital from Nov. to Dec., 2017 for investigation. MDASI-C,PHQ-9, GAD -2 etc. were used for survey. The SPSS21.0 was used for statistical analysis.
Impact on practice or Results: The total score of 13 core symptoms of 600 hospitalized cancer patients was 19.88 ± 14.71. Spearman correlation analysis between symptoms showed that there was a positive correlation among 13 symtoms(P
The symptoms with factor load over 0.40 were selected for the classification of the symptom clusters,
Based on dynamic clustering method, there were 3 subgroups divided
The incidence of suicidal ideation in the most recent week was 2.69% (17).there was a statistical difference in different degrees of depression (P
Discussion or Conclusions: Most of hospitalized cancer patients suffered the symptoms such as distress and suicidal ideation so on.There was a positive correlation among symtoms.There were three main symptom clusters: (1) comprehensive adverse reaction symptoms; (2).symptoms of upper gastrointestinal adverse reactions, (3) symptoms of psychological disorders.There were 3 subgroups divided: all low symptoms,low pain and moderate symptoms, high symptoms. The incidence of suicidal ideation was related with depression. The more severe the depression was, the higher the incidence of suicidal ideation was. But no suicide occurred after interventions and followup.
529 Exploration of Pivotal Encounters and Temporal Dynamics of Distress across the Cancer Treatment Trajectory
Jennifer Stevens, Kristine Kwekkeboom
University of Wisconsin-Madison, Madison, USA
Background/rationale or Objectives/purpose: Timing and frequency of cancer distress screening is inconsistent. The American College of Surgeons CoC accreditation standards require distress screening at least once, at a pivotal visit, but allow institutions to define “pivotal” encounters. IPOS endorses monitoring distress as the 6th vital sign, implying that distress trends like homeostatic variables. If distress is exacerbated before, but relieved after a clinical encounter, then timing of screening is germane to the need for intervention. The purpose of the proposed study is to empirically identify “pivotal” visits and trends in distress over time.
Methodology or Methods: We propose a mixed methods study. Breast cancer patients, stage I-III, will complete distress screening bi-weekly and before and after all clinic appointments from diagnosis through 3 months post-treatment. We will interview participants before and at the end of chemo/radiation therapy, and 3 months post-treatment to ascertain perceptions of events or changes that warrant distress assessment. Transcripts will be analyzed using content analysis. Pre- and post-visit distress scores will be compared to evaluate the effects of screening timing and to identify homeostatic trends. General mixture modeling will be used to identify trajectories of distress over time. Distinct trajectories will be compared with respect to participants’ demographic and clinical characteristics.
Impact on practice or Results: Findings will provide evidence to direct the frequency and timing of distress screening, and need for intervention.
Discussion or Conclusions: What strategies may be useful in recruiting and retaining participants?
What is a reasonable frequency for home-based distress assessments?
What patient-related data is most salient to collect in explaining distress trajectories?
524 Patient-reported experience of diagnosis, management, and burden of renal cell carcinomas: Results from a global patient survey in 43 countries
Deborah Maskens1, Rachel Giles1, Robert Bick2, Robin Martinez3, Malcolm Packer4, Daniel Yick Chin Heng5, James Larkin6, Axel Bex7, Michael Jewett8, Eric Jonasch9, Sara Maclennan10
1International Kidney Cancer Coalition, Duivendrecht, Netherlands;2Kidney Cancer Canada, Toronto, Canada;3Smart Patients, Miami, USA;4Kidney Cancer UK, Cambridge, United Kingdom;5University of Calgary, Calgary, Canada;6Royal Marsden NHS Foundation Trust, London, United Kingdom;7Royal Free London NHS Foundation Trust and UCL Division of Surgery and Interventional Science, London, United Kingdom;8Princess Margaret Cancer Centre, University Health Network and University of Toronto, Toronto, Canada;9Department of GU Medical Oncology, UT MD Anderson Cancer Center, Houston, USA;10University of Aberdeen, Aberdeen, United Kingdom
Background/rationale or Objectives/purpose: The International Kidney Cancer Coalition (IKCC) is a federation of 38 affiliated patient organisations representing 1.2 million patients worldwide, committed to reduce the global burden of kidney cancer. A large-scale global survey of RCC patients to capture real world experiences has never been undertaken.
Methodology or Methods: The 35-question survey was designed to identify geographic variations in patient education, experience and awareness, access to care, best practices, quality of life and unmet psychosocial needs. It was completed online or in paper form by kidney cancer patients and /or their caregivers (Sept-Oct 2018).
Impact on practice or Results: 1,983 responses were recorded from 43 countries in 14 languages. Analysis revealed that at diagnosis, 43% of all respondents had no understanding of their RCC sub-type; RCC patients < 45 years old reported nearly twice as many barriers to treatment as patients > 45 at diagnosis. Females reported longer delays to diagnosis than males. Shared decision making remains aspirational: globally 29% of all patients reported no involvement in their treatment decision, responding ‘my doctor decided for me’. While 96% of respondents reported psychosocial impacts, surprisingly, only 50% disclosed them to their healthcare team. Most difficult times experienced by patients varied by gender and by country.
Discussion or Conclusions: This research sheds light on the unmet needs in the RCC patient experience and highlights improvements to the design and delivery of supportive care. This first-ever global survey serves as a benchmark for longitudinal data collection and could be used to inform future disease-specific quality of life instruments.
516 Development and psychometric validation of a short instrument for measuring health related quality of life in oncological patients in routine care
Theresa Schrage, Mirja Görlach, Christiane Bleich, Holger Schulz
University Medical Center Hamburg-Eppendorf, Hamburg, Germany
Background/rationale or Objectives/purpose: Purpose
Patient-reported outcomes (PROs) and especially Health related Quality of Life (HrQoL) could represent an important addition to current routine care of cancer patients. This study aims to develop a psychometric valid short questionnaire to measure HrQoL in cancer in- and out-patients for use in routine care.
Methodology or Methods: This study has two phases. (1) a qualitative study to develop a short questionnaire measuring HrQoL. This included interviews with patients and focus groups with clinicians to identify clinically relevant dimensions of HrQoL. (2) testing of the new questionnaire at two different times during treatment (t0 and t1) in five oncological clinics, additionally using standardized questionnaires to analyze the validity. With N = 630 at t0 and N = 391 at both sample points, imputation of missing values using Expectation-Maximization algorithm was carried out. Further explorative factor analysis with oblique rotation and confirmative Pearson's-product-moment correlations with established scales were computed. Re-test reliability was verified and measuring responsiveness by RM-ANOVA.
Impact on practice or Results: First results show a factor structure for four (mental distress, dignity in a clinical setting, by physical impairment affected autonomy) from five factors. Analysis revealed a good retest reliability and good convergent validity (r > .5). Most scales also demonstrated good responsiveness to change.
Discussion or Conclusions: Results support the use of the questionnaire within this patient population in routine care. In order to attain this goal and therefore the improvement of HrQoL, the developed and tested questionnaire will be implemented in routine care, including an evaluation of this implementation process.
505 A nationwide assessment of compliance to eviQ genetic testing and risk management guidelines relating to for people with hereditary cancer syndromes
Rajneesh Kaur1, Bettina Meiser1, Judy Kirk2, Michelle Peate1, Robyn Ward3, Finlay Macrae4, Janett Hiller5, Alison Trainer6, Gillian Mitchell7
1UNSW Sydney, Sydney, Australia;2Crown Princess Mary Cancer Centre at Westmead Hospital, Sydney, Australia;3University of Queensland, Brisbane, Australia;4University of Melbourne, Melbourne, Australia;5Swinburne University of Technology, Hawthorn, Australia;6, Peter MacCallum Cancer Centre, Melbourne, Australia;7The Sir Peter MacCallum Department of Oncology, Melbourne, Australia
Background/rationale or Objectives/purpose: This project aimed to assess compliance to eviQ guidelines (web -based point of care cancer genetics guidelines regarding (i) consideration of BRCA1/2 testing, and (ii) risk management advice for BRCA1, BRCA2 and Lynch Syndrome-related mutation carriers.
Methodology or Methods: Data collection was performed by trained genetic counsellors at 12 familial cancer clinics across Australia. All files relating to unaffected carriers of BRCA1, BRCA2 and Lynch Syndrome-related mutations were audited and assessed in terms of whether or not risk management options recommended by eviQ applicable during each assessment period were discussed. All carriers were then invited to participate in a telephone interview to assess their adherence and barriers to recommended risk management guidelines.
Impact on practice or Results: For risk reducing recommendations around BRCA1/BRCA2 recording of advice in files around risk management increased after the implementation of guidelines. For example, 79% carriers were advised to undergo risk reducing bilateral mastectomy and 91% after the implementation of the guidelines (p = 0.016). During the interview majority of participants confirmed that they were following one or other risk reducing advice. For Lynch Syndrome there was poor documentation of risk reducing advice in the files and this did not show any improvements after the implementation of the guidelines. The documentation of some risk reducing advice such as subtotal colectomy was as low as 12%. During interviews 87% of patients confirmed that they were having colonoscopies. Twenty four percent patients were taking aspirin as risk reducing medicine.
Discussion or Conclusions: The study provides the basis for the development of interventions to address non-adherence to risk reducing guidelines.
459 An Evaluation of Qualitative Rigour in Oncology Mixed Methods Randomized Controlled Trials
Maclean Thiessen, Nancy Moules, Shelley Raffin Bouchal, Shane Sinclair
University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: Objectives/purpose: Qualitative research is increasingly being integrated within RCTs in order to investigate patient centered outcomes. This review aimed to understand how qualitative research is being utilized and reported in oncology RCTs.
Methodology or Methods: Methods: MEDLINE and CINAHL were searched to identify reports of qualitative studies associated with RCTs evaluating interventions related to cancer care published between 2008 and 2018. Reports were systematically reviewed using a data extraction tool designed to evaluate the rigour of the qualitative component, integration into the RCT, and the overall reporting of the qualitative component.
Impact on practice or Results: Results: Thirty-six articles were identified for inclusion in this review. Twenty-seven of these were reports from studies evaluating interventions related to information/education, diet/exercise, or psycho-therapeutic interventions. Qualitative methods focused mostly on gaining insight into the experience of receiving the intervention or participating in study procedures. Some reports included insufficient information to understand how the qualitative component fit with the quantitative RCT component. Integration between the RCTs and associated qualitative inquiry was limited in terms of study design and interpretation of results.
Discussion or Conclusions: Conclusions: Incorporating qualitative approaches with RCTs in the cancer context is a challenging undertaking. No clearly established guidelines exist to guide study design or reporting. Investigators are encouraged to carefully plan how to integrate the RCT and qualitative components, both in the design and reporting of findings, in order to take full advantage of this powerful research strategy.
436 Preferences of young adult cancer patients for communication when receiving bad news
Ayako Sato1, Maiko Fujimori1, Masako Okamura1, Asako Mitsui1, Mihoto Umehashi1, Sayaka Jinno1, Kotone Hata1, Yosuke Uchitomi2
1National Cancer Center, Center for Public Health Sciences, Tokyo, Japan;2National Cancer Center Hospital, Tokyo, Japan
Background/rationale or Objectives/purpose: Young adult patients want more information about their own life-threatening illness or a hypothetical life-threatening illness (Lyon et al., 2004). The survey targeting cancer patients has shown that age was related to preferences for communication (Fujimori et al., 2007). However, there are few studies that investigate the preferences of young adult cancer patients for communication when receiving bad news. The objective of this study is to clarify the preferences of young adult cancer patients for communication when receiving bad news.
Methodology or Methods: An online survey was conducted. The survey included 95 questions about preferences for communication when receiving bad news based on previous study. The descriptive analysis was conducted.
Impact on practice or Results: Two hundred six participants (26 male, 180 female) completed the survey. The mean age was 33.7 (SD: 4.3, range: 20–39). Types of cancer were as follows; uterine, 84 (40.8%), breast, 25 (12.1%), thyroid, 23 (11.2%). Participants with recurrence/ metastasis were 15 (7.3%). Participants strongly preferred their physicians to discuss future treatment plans (91%), to answer their questions (90%), and to discuss all treatment methods that they can use (89%). Participants did not prefer their physicians to communicate vaguely (5%), to convey only bad news (9%), and to respond with an irritated (11%).
Discussion or Conclusions: It was suggested that the young adult cancer patients wanted to discuss clearly about treatment.Future research needs to consider effective approaches to achieve preferred communication between young adult cancer patients and physicians.
420 Engaging older adults living with cancer and multimorbidity and their carers: Setting research priorities together for patient-centered care
Kristen Haase1, Shahid Ahmed1,2, Schroder Sattar1
1University of Saskatchewan, Saskatoon, Canada;2Saskatchewan Cancer Agency, Saskatoon, Canada
Background/rationale or Objectives/purpose: Older adults with cancer and multimorbidity have complex needs and represent a growing proportion of those with cancer. This is also a ‘hard to reach population’ as the burdens of cancer in addition to age-related changes may complicate participation in patient-oriented research. The purpose of this presentation is to share results from a public meeting where we brought together a group of older adults with cancer and their carers to discuss research priorities for older adults with cancer and multimorbidity and their participation in research.
Methodology or Methods: We conducted a public meeting with older adults living with cancer and mulitmorbidity and their carers (n = 20) who were invited to set priorities for research and to discuss their interest in research engagement. We audio-recorded the public meetings, maintained notes of recurrent themes and ideas, took photos of important artifacts (i.e. white board and flip chart notes), and conducted a post-meeting evaluation and follow-up via telephone. Data were analyzed using thematic and descriptive analysis.
Impact on practice or Results: Preliminary results demonstrate that older adults with cancer are interested in being engaged in research and are open to sharing their perspectives but express hesitations due to lack of experience and concerns related to involvement (i.e. travel). Key priorities for research center on improving the patient experience and addressing system-related challenges to improve care.
Discussion or Conclusions: Older adults living with cancer and multimorbidity express interest in participating in research. If we can address barriers to participation, we can capitalize on important opportunities to work together to improve care.
405 A New International Initiative to Harmonize Analysis of Cancer Patient-Reported Outcomes
Carolyn Gotay1, Madeline Pe2, Corneel Coens2, Ethan Basch3, Melanie Calvert4, Alicyn Campbell5, Charles Cleeland6, Kim Cocks7, Laurence Collette2, Nancy Devlin8, Lien Dorme2, Amylou Dueck9, Hans-Henning Flechtner10, Ingolf Griebsch11, Mogens Groenvold12, Laura Lee Johnson13, Madeleine King14, Paul Kluetz13, Michael Koller15, Daniel C Malone16, Francesca Martinelli2, Sandra A Mitchell17, Jammbe Z Musoro2, Daniel O’Connor18, Kathy Oliver19, Elisabeth Piault-Louis20, Martine Piccart21, Chantal Quinten22, Jaap C Reijneveld23, Christoph Schürmann24, Jeff Sloan25, Ashley Wilder Smith17, Katherine M Soltys26, Rajeshwari Sridhara13, Martin Taphoorn27, Galina Velikova28, Andrew Bottomley2
1School of Population and Public Health, University of British Columbia, Vancouver, Canada;2European Organisation for Research and Treatment of Cancer (EORTC Headquarters), Brussels, Belgium;3Lineberger Comprehensive Cancer Center; University of North Carolina, Chapel Hill, NC, USA, Chapel Hill, USA;4Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom;5Patient Relevant Evidence, San Francisco, USA;6Department of Symptom Research, University of Texas MD Anderson Cancer Center, Houston, USA;7Adelphi Values, Bollington, Cheshire, United Kingdom;8University of Melbourne, Melbourne, Australia;9Alliance Statistics and Data Center, Mayo Clinic, Scottsdale, USA;10Clinic for Child and Adolescent Psychiatry and Psychotherapy, Universität Magdeburg, Magdeburg, Germany;11Boehringer Ingelheim International GmbH, Ingelheim, Germany;12Department of Public Health; Bispebjerg Hospital and University of Copenhagen, Copenhagen, Denmark;13Office of Hematology and Oncology Products, Center for Drug Evaluation and Research, US Food and Drug Administration (FDA), Silver Spring, USA;14School of Psychology and Sydney Medical School, University of Sydney, Sydney, Australia;15Center for Clinical Studies, University Hospital Regensburg, Regensburg, Germany;16College of Pharmacy, University of Arizona, Tucson, USA;17Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute (NCI), Bethesda, USA;18Medicines and Healthcare products Regulatory Agency (MHRA), London, United Kingdom;19International Brain Tumour Alliance (IBTA), Surrey, United Kingdom;20Genentech, a member of the Roche group, South San Francisco, USA;21Institut Jules bordet, Université Libre de Bruxelles, Brussels, Belgium;22European Centre for Disease Prevention and Control (ECDC), Surveillance and Response Support Unit, Epidemiological Methods Section, Stockholm, Sweden;23VU University Medical Center, Department of Neurology & Brain Tumor Center, Amsterdam, Netherlands;24Institute for Quality and Efficiency in Health Care (IQWIG), Cologne, Germany;25Alliance Statistics and Data Center, Mayo Clinic, Rochester, USA;26Health Canada, Ottawa, Canada;27Leiden University Medical Center/Medical Center Haaglanden, Leiden/The Hague, Netherlands;28Leeds Institute of Cancer and Pathology, University of Leeds, St James's Hospital, Leeds, United Kingdom
Background/rationale or Objectives/purpose: Patient-reported outcomes (PROs) are increasingly identified as important data to inform risks and benefits of cancer treatments. However, current inconsistency in defining, analyzing and interpreting PRO endpoints impedes their use and comparison of results across RCTs. Therefore, an international collaboration was formed: the Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints Data (SISAQOL) Consortium.
Methodology or Methods: SISAQOL activities include face-to-face meetings, conference calls, email communications, surveys using a modified Delphi process, and formation of subgroups to focus on specific issues.
Impact on practice or Results: SISAQOL started with an initial group of experts who recommended enlarging the membership to ensure that its international and multidisciplinary scope included leading PRO researchers and statisticians, experts from international oncologic and academic societies, advisory and regulatory bodies, pharmaceutical industry, cancer institutes, and patient advocacy organizations. The group identified the lack of common definitions for many concepts and techniques used in PRO analysis. Subgroups worked to define PRO terms and research objectives and matched them with appropriate statistical methods, and explored approaches to analyzing missing data. Development of consensus recommendations for PRO analysis in cancer RCTs is in progress.
Discussion or Conclusions: The SISAQOL Consortium uses a participatory group process that builds on the needs, knowledge and expertise of diverse stakeholders with the goal of developing robust standards for PRO analysis in cancer RCTs. Including PROs in RCTs costs time, money and/or effort from all stakeholders, including patients. Harmonizing the analysis of these data will enhance their interpretability and impact.
This publication reflects solely the views of the individual authors.
396 Memory for a cancer consultation; an experimental investigation of memory accuracy in recall of a Malignant Melanoma diagnosis
Lydia Harkin, Mike Rennoldson, Lucy Justice
Nottingham Trent University, Nottingham, United Kingdom
Background/rationale or Objectives/purpose: Cancer patients encounter a wealth of clinical information during diagnosis. We have evidence that patients struggle to remember information, but limited understanding of what is more or less easily remembered and what factors affect successful remembering. Understanding memory processes may help us to develop patient strategies to remain better informed in clinical settings.
This exploratory study aimed to understand memory for a cancer diagnosis, specifically whether accuracy differs when recalling different information (for instance, the diagnosis details vs the prognosis) and as a function of individual differences (e.g. age, current mood, health beliefs).
Methodology or Methods: A non-clinical sample of 136 participants (mean age = 36 years, SD = 13.85 years, nfemale = 96) watched a video consultation of a malignant melanoma diagnosis constructed according to UK clinical quality standards for information provision. Participants recalled the diagnosis information in an online free text form and completed measures of their health beliefs and demographic background. A coding system was developed to measure accuracy of recall which examined information in the domains of diagnosis, prognosis, treatment, risks, and clinician's advice.
Impact on practice or Results: Overall recall accuracy was 16.09%. People most poorly remembered the diagnosis (12% recall) and most accurately remembered prognosis information (38% recall). Bayesian models examined the effects of individuals differences on recall accuracy. Age, mood, and health beliefs showed negligible influence on accurate recall.
Discussion or Conclusions: In our experimental analogue study a very low level of recall was observed. This spurs a need to further research cancer information delivery.
363 Predictive trajectories of recovery after Robot-Assisted Radical Prostatectomy (RARP)
Chiara Marzorati1,2, Dario Monzani1,2, Ketti Mazzocco1,2, Francesca Pavan1, Gabriele Cozzi1, Ottavio De Cobelli1,2, Massimo Monturano1, Gabriella Pravettoni1,2
1European Institute of Oncology IRCCS, Milan, Italy;2University of Milan, Milan, Italy
Background/rationale or Objectives/purpose: Despite all advancements in prostate cancer treatments, sexual and urinary dysfunctions are the most common functional consequences in men undergone Robot-Assisted Radical Prostatectomy (RARP) and they may persist for several years. The aim of the present study was to identify trends of patients’ urinary and sexual dysfunctions from a clinical and psychological perspective, analyzing whether sociodemographic and medical predictors could affect different one-year longitudinal trajectories.
Methodology or Methods: A sample of 478 Italian prostate cancer patients completed the EPIC-26 questionnaire at the pre-hospitalization, 45 days and 3, 6, 9, and 12 months after RARP. The person-oriented approach of Latent Class Growth Analysis (LGCA) was conducted separately for sexual dysfunction and urinary incontinence EPIC-26 subscales. The association between membership in the two longitudinal trajectories of urinary and sexual dysfunctions was assessed by Chi-square test and its related contingency table. Sociodemographic and clinical characteristics (age, BMI, diabetes, nerve-sparing procedure) were analyzed as potential predictors in differentiating among the identified longitudinal trajectories.
Impact on practice or Results: Patients showed different trajectories of recovery both in urinary incontinence and in sexual dysfunction. The LCGA identified three and five different initial medical status and trends of recovery in impotence and urine leaking, respectively, that were influenced by clinical and sociodemographic predictors such as age, pre-surgical scores of physical dysfunctions, diabetes and BMI. A great pr