S1 Understanding How Cancer is Different for Young Adults using the YACPRIME Study
Sheila N. Garland
Departments of Psychology and Oncology, Memorial University, St. John's, Canada
Young adulthood is a period categorized by instability, self-discovery, acquiring independence, and growth, which can lead to increased vulnerability. This vulnerable status is further complicated when facing life-threatening illness, such as cancer. A young adult (YA) diagnosed with cancer still has to navigate this developmental period, but these challenges are further compounded with the mental, physical, and financial consequences associated with cancer. This session will present research from the Young Adults with Cancer in their PRIME (YACPRIME) study, a collaborative patient-oriented partnership between researchers and Young Adult Cancer Canada, the leading support and advocacy organization devoted to young adults living with, through, and beyond cancer. Among the objectives of this national survey of young adults diagnosed with cancer between the ages of 15 and 39 in Canada was to understand how cancer is different for young adults. Each presentation in this session will be co-presented by a young adult cancer survivor who can speak to the lived experience of the topic. This session will examine how YAs with cancer compare to their peers in relation to psychological wellbeing and financial status. Further, this session will explore how the quality of life of YAs with cancer fare against other Canadians overall. This research will help understand how cancer is different for young adults, and our findings will be used to develop future interventions, and advocate for supports and policy changes, to better meet the needs of YAs with cancer in Canada.
S1-471 Factors Related to High Psychological Distress in Young adults with Cancer Compared to Matched Peers: A YACPRIME study
Breanna Lane1, Sheila N. Garland1,2, Ken Fowler1, Karine Chalifour3, Geoff Eaton3
1Department of Psychology, Memorial University, St. John's, Canada;2Discipline of Oncology, Memorial University, St. John's, Canada;3Young Adult Cancer Canada, St. John's, Canada
Background/rationale or Objectives/purpose: A diagnosis of cancer in young adulthood can disrupt an important period of development and identity formation. This study examined whether psychological distress (PD) differs in YAs with cancer compared to their non-cancer peers, and identified factors related to high PD in YAs with cancer.
Methodology or Methods: Canadian YAs (n=448) diagnosed between the ages of 15-39 were compared to 448 age, sex, and education matched controls randomly sampled from the 2012 Canadian Community Health Survey. The primary measure was the Kessler Psychological Distress Scale (K10). Groups were compared using chi-square tests of independence. Univariate and multivariate logistic regression was used to examine the demographic, clinical and psychological factors associated with high (moderate/severe) PD in the YA cancer group.
Impact on practice or Results: YAs with cancer reported significantly higher PD than their matched peers (24.89 vs. 15.75; p < .0005). In the multivariate model, income > $60,000 was associated with a reduced likelihood of high PD (AOR = 0.51; p = 0.02). Other factors associated with high PD in YAs with cancer include poor sleep (AOR = 3.79; p = 0.005), elevated fear of cancer recurrence (AOR = 6.89; p < 0.0005), body image dissatisfaction (AOR = 2.78; p < 0.0005), and less than high social support (average AOR = 2.74; p = 0.032; poor AOR = 8.77; p < .0005). Age, sex, cancer stage and type, and time since diagnosis were among variables not associated with PD.
Discussion or Conclusions: YAs with cancer experience significantly greater distress than their non-cancer peers. This distress is associated with modifiable factors such as sleep, fear of cancer recurrence, body image dissatisfaction, and social support, illustrating key areas for intervention
S1-472 An Age-Based Financial Comparison of Young Adults with Cancer and their Non-Cancer Peers: A YACPRIME Study
Kaitlyn Mahon1, Sheila N. Garland1,2, Breanna Lane1, Ken Fowler1, Karine Chalifour3, Geoff Eaton3
1Department of Psychology, Memorial University, St. John's, Canada;2Discipline of Oncology, Memorial University, St. John's, Canada;3Young Adult Cancer Canada, St. John's, Canada
Background/rationale or Objectives/purpose: A cancer diagnosis can impact financial well-being. Little is known about the financial impact of cancer diagnosed in young adulthood, who may be at higher risk of impact due to their developmental stage. The current YACPRIME analysis examined how age impacts financial well-being of YAs with cancer compared to their non-cancer peers.
Methodology or Methods: A Canadian sample of 622 individuals diagnosed with cancer between age 15 and 39 were grouped based on current age (YAs ≤ 34 and ≥ 35). YAs with cancer were compared to age, sex and education-matched controls randomly sampled from the 2014 Canadian Financial Capability Survey and Canadian Community Health Survey.
Impact on practice or Results: Income distribution for YAs with cancer in both age groups was different from their non-cancer peers (p < .001). In those ≤ 34, 64% of YAs with cancer reported a personal income < $20,000 compared to 40% of peers. Conversely, 0% made > $80,000 compared to 4% of peers. In those ≥35, 45% of YAs with cancer made < $20,000 compared to 20% of peers and 0% made > $80,000 compared to 14% of peers. YAs with cancer were also different from peers in terms of assets (p < .001) with 72% and 59% of YAs ≤34 and ≥35 reporting less than $100,000 in assets compared to 43% and 33% of peers.
Discussion or Conclusions: Regardless of current age, both groups were financially compromised compared to non-cancer peers. Increased awareness and assistance programs are needed to help YAs recover from the financial impact of cancer.
S1-475 Quality of Life in Young Adult Survivors of Cancer Compared to National Norms: A YACPRIME Study
Fiona Schulte1,2, Karine Chalifour3, Geoff Eaton3, Sheila N. Garland4,5
1Department of Oncology, Division of Psychosocial Oncology, University of Calgary, Calgary, Canada;2Hematology, Oncology and Transplant Program, Alberta Children's Hospital, Calgary, Canada;3Young Adult Cancer Canada, St. John's, Canada;4Department of Psychology, Memorial University, St. John's, Canada;5Discipline of Oncology, Memorial University, St. John's, Canada
Background/rationale or Objectives/purpose: Young adults (YA) diagnosed with cancer will spend the majority of their lives in survivorship, making quality of life (QOL) an important consideration. The current study examined the QOL of a national cohort of YAs diagnosed with cancer between the ages of 15-39 compared to the Canadian population.
Methodology or Methods: As part of the Young Adults with Cancer in their Prime (YACPRIME) survey, 436 YAs (15.5% male; median age = 34 years, range 20-64; median years from treatment completion = 2 years, range 0–47 years) completed the SF-12 as a measure of QOL. Data from YA's were compared to population data from the Canadian Community Health Survey 2010 (n = 2139, 46% male).
Impact on practice or Results: Univariate analyses of variance controlling for sex and age revealed a significant difference between YA survivors and the Canadian population on the physical component summary score (mean = 44.84 v. 49.71; F (1, 2268) = 144.61, P < .00, η2 = 0.06) and the mental health component summary score (mean = 38.67 v. 53.65; F (1,2268) = 635.99, p < .00, η2 = 0.22).
Discussion or Conclusions: YA survivors of cancer, a median of 2 years from completion of their treatment report significantly worse quality of life compared to the Canadian population. Notably, survivors scored more than one standard deviation below the population mean with respect to their mental health. This study has important implications for the long-term follow-up on the mental well-being of YA survivors of cancer. Interventions to support these survivors are urgently needed.
S2 Costs of fear of cancer recurrence and its treatment
Université Laval, Québec, Canada
Fear of cancer recurrence is a highly prevalent issue in cancer patients. The available literature suggests that fear of cancer recurrence is associated with a variety of negative consequences, including greater psychological distress, lower quality of life, and greater health care costs due to increased use of health care services and psychotropic medications. In the last decade, several psychological interventions have been developed and tested to help patients overcome their fear of cancer recurrence and reduce its deleterious effects. Empirical data supporting the efficacy of these programs are burgeoning. To ensure these psychological treatments are integrated into routine cancer care, it is crucial to demonstrate not only that these interventions are effective, but also that they are cost-effective. This symposium will present the results of three clinical trials that have included heath economic evaluations of psychological interventions targeting fear of cancer recurrence. First, Dr. Judith Prins will report the results of a health economic evaluation of an eHealth intervention for fear of cancer recurrence called SWORD. Second, Dr. Nadine Kasparian will present findings of a randomized controlled trial evaluating the longer-term efficacy and cost-effectiveness of a brief telephone-based psychological intervention for people at high risk of developing another melanoma. Finally, Dr. Phyllis Butow will describe results of a cost-effectiveness analysis conducted as part of a trial assessing the efficacy of the ConquerFear intervention. Implications for health policy, clinical implementation and future research will be discussed.
S2-619 ‘I was in a dark place and now I feel alive’: Efficacy and cost-effectiveness of a brief mental health intervention for people with melanoma
Nadine Kasparian1,2,3, Mbathio Dieng4, Phyllis Butow5, Daniel Costa6, Scott Menzies7,8, Serigne Lo2, Graham Mann2,9, Anne Cust2,10, Rachael Morton4,2
1Harvard Medical School, Boston, USA;2Melanoma Institute Australia, University of Sydney, Australia;3Faculty of Medicine, University of New South Wales, Sydney, Australia;4NHMRC Clinical Trial Centre, University of Sydney, Australia;5Psycho-oncology Co-operative Research Group, University of Sydney, Australia;6Pain Management Research Institute, University of Sydney, Australia;7Sydney Medical School, University of Sydney, Australia;8Sydney Melanoma Diagnostic Centre, Royal Prince Alfred Hospital, Australia;9Westmead Institute for Medical Research, University of Sydney, Australia;10Sydney School of Public Health, University of Sydney, Australia
Background/rationale or Objectives/purpose: People with melanoma want effective treatments for managing fear of cancer recurrence (FCR). This study reports the longer-term outcomes and cost-effectiveness of a brief intervention to reduce FCR in people at high-risk of developing another melanoma.
Methodology or Methods: Adults previously diagnosed with Stage 0-II melanoma were randomly allocated to the intervention (n = 80) or control (n = 84) group. The intervention comprised a psycho-educational resource and three telephone-based sessions with a psychologist. Intervention effect at 12-months was estimated by intention-to-treat analysis. Within-trial cost-effectiveness and cost-utility analyses were carried out using linked Medicare data.
Impact on practice or Results: At 12-months, intervention participants reported significantly lower FCR severity compared to controls (95%CI −2.6, −0.2; p = 0.02). The proportion of participants with ‘high’ FCR (FCRI severity score ≥13) was 9% lower in the intervention compared to control group. Mean number of QALYs based on utilities from the AQoL-8D was 0.01 higher in the intervention compared to control group at 12-months. Mean cost of the intervention was AU$1,614 per participant, including development costs. ICER per case of high FCR avoided was AU$12,903 (AU$5,031, excluding development costs). The cost-effectiveness acceptability curve demonstrated a 78% probability of the intervention being cost-effective relative to usual care at a threshold of AU$50,000 per extra person avoiding FCR.
Discussion or Conclusions: Our brief intervention significantly reduced FCR immediately, 6-months and 12-months post-intervention. Economic evaluation suggests an improvement in FCR for the intervention group to be good value for money; whether this is deemed cost-effective is dependent on the ‘willingness-to-pay’ of the funder for a case of FCR avoided.
S2-623 Health economic evaluation of SWORD, an eHealth intervention for fear of cancer recurrence
Judith Prins1, Rens Burm1, Laura Rodwell2, Wietske Kievit2, Anne Speckens3, Marieke van de Wal4, Belinda Thewes5
1Radboud University Medical Center, Department of Medical Psychology, Nijmegen, Netherlands;2Radboud University Medical Center, Department for Health Evidence, Nijmegen, Netherlands;3Radboud University Medical Center, Department of Psychiatry, Nijmegen, Netherlands;4Maxima Medical Center, Department of Medical Psychology, Veldhoven, Netherlands;5University of Sydney, Sydney, Australia
Background/rationale or Objectives/purpose: Blended cognitive behaviour therapy (bCBT) is an effective treatment for fear of cancer recurrence (FCR) in cancer survivors (CS) with high FCR. With increasingly constrained healthcare budgets it is important to ensure that the benefits of an intervention outweigh the costs. This study aimed to evaluate the cost-effectiveness of the SWORD intervention compared to care as usual (CAU).
Methodology or Methods: Data of 88 CS with high FCR randomly assigned to bCBT (n = 45) or CAU (n = 43) were available. Costs and quality-adjusted life years (QALYs) at 3, 9 and 15 months from baseline were used as the outcome measures in the cost-effectiveness analyses. To calculate QALYs, utility scores obtained by using the EuroQol questionnaire (EQ-5D-3L) were multiplied by the duration of follow-up. Intervention program costs included bottom-up calculated costs of psychologist training, supervision and consultations, in addition to costs of website development, updates and user licenses divided by a conservative amount of potential annual users in a regional implementation scenario.
Impact on practice or Results: Total QALYs were non-significantly different between conditions when adjusted for utility score baseline differences (0.984 compared to 0.957, p = 0.385), while total costs were €631 lower (95% CI -1737 to 2794, p = 0.587). Intervention costs of bCBT were €466. The incremental cost-effectiveness ratio amounted to an additional €2049 per QALY gained, with a 62% probability that bCBT is cost-effective at a willingness to pay (WTP) threshold of €20,000 per QALY. Results were confirmed in sensitivity analyses.
Discussion or Conclusions: bCBT is a relatively inexpensive intervention with similar costs and QALYs as CAU.
S2-748 ConquerFear for treating fear of cancer recurrence: Cost-efficacy
Phyllis Butow1,2, Shih Sophie3, Belinda Thewes1, Jane Turner4, Louise Sharpe5, Jane Beith6, Jemma Gilchrist7, Ben Smith8, Cathy Mihalopoulos9
1Psycho-Oncology Co-operative Research Group (PoCoG), University of Sydney, Sydney, Australia;2CeMPED, School of Psychology, Sydney, Australia;3Deakin University, Melbourne, Australia;4University of Queensland, Brisbane, Australia;5School of Psychology, University of Sydney, Sydney, Australia;6Lifehouse, Sydney, Australia;7Crown Princess Mary Cancer Centre, Sydney, Australia;8Ingham Institute for Applied Medical Research, Sydney, Australia;9Deakin University, Melbourne, Australia
Background/rationale or Objectives/purpose: ConquerFear is an effective intervention for fear of cancer recurrence (FCR) and resulted in greater improvements over treatment than a relaxation control intervention. This paper reports the cost-effectiveness of ConquerFear.
Methodology or Methods: Healthcare resource use was collected by a tailored cost diary. Incremental costs were calculated as the difference in total costs between the intervention and control groups. Incremental cost-effectiveness ratios (ICERs) were estimated by cost-effectiveness and cost-utility analysis, comparing incremental costs with incremental outcomes measured. Non-parametric bootstrap analysis was performed to evaluate uncertainty in costs and outcomes.
Impact on practice or Results: Two hundred and twenty-two patients participated in the trial, receiving treatment from 26 therapists. ConquerFear outperformed the relaxation control in reducing FCRI (p = 0.001) and on AQoLD utility p = .01) immediately post and at 6 month follow-up. Participants received on average 3.69 sessions, incurring an average cost of $297 per person, with no group difference. The ITT analysis results indicated a mean ICER $34,300/QALY with average incremental cost $488 and health gain of 0.0142 QALYs, from the healthcare sector perspective. Bootstrap analysis showed 30% of iterations were dominant and overall 53% ICERs were cost-effective as judged by the commonly used $50,000/QALY threshold.
Discussion or Conclusions: The ConquerFear intervention is associated with a modest cost and may provide good value for money, but further evidence is needed. Long-term cost-effectiveness needs further investigation to capture full benefits from the intervention beyond the trial follow-up.
S3 Growing and Developing Psychosocial Oncology Programs in Africa: Challenges and Opportunities
Jane Turner and Luzia Travado
University of Queensland and Champalimaud Foundation, Brisbane and Lisbon, Australia
The Global Action Plan for the prevention and control of NCDs (2013–2020) aims a 25% reduction in NCD-related premature deaths by 2025. Hand in hand with this plan, IPOS and WHO have been collaboratively promoting psycho-oncology as a standard of universal care in the context of low-middle-income (LMI) countries including on the continent of Africa. This symposium will describe the contribution of psycho-oncology and IPOS collaboration to the attainment of Universal Health Coverage in Africa, the history and evolution of psycho-oncology in Africa and the role of IPOS Federated APOA, and a framework for adapting psychosocial clinical guidelines to LMI countries. Dr. Prebo Baranga will present on the importance of attainment of universal health coverage in the pursuit of equity in cancer care and treatment outcomes in Africa. He will offer how the field of psycho-oncology and IPOS can contribute to this pursuit, as well as how important comprehensive cancer care is in Africa. Dr. Andreas Ullrich will present further insights on the contribution of psycho-oncology and palliative care in the AFRO region. Dr. Chioma Asuzu will describe the history and evolution of psycho-oncology in Africa, the role of IPOS Federated APOA, and common IPOS-APOA capacity-building priority goals. Dr. Melissa Henry will cover a knowledge translation framework that has been useful in guiding training initiatives and adapt psychosocial clinical guidelines to LMI countries. Dr. Jane Turner will be discussant in this symposium and Dr. Luzia Travado will chair the symposium.
S3-549 Contribution of Psycho-Oncology to the Attainment of Universal Health Coverage, and IPOS collaboration
Prebo Barango1, Andreas Ullrich2
1World Health Organization, East Africa, Zimbabwe;2University of Berlin Charité Center of Global Health, Berlin, Germany
Background/rationale or Objectives/purpose: In Africa, cancer burden is increasing at a rate projected to double by 2040 from 1,055,172 new cases in 2018 to 2,123,245 by 2040.
In Africa late-diagnosis partly explains the wide mortality-to-incidence ratio for most cancers, delays related to low population health literacy and a weak health system in most African countries. Cancers otherwise curable if detected early carry a poor prognosis (e.g. 10–20% 5-year survival for childhood cancers vs. 80–90% in high income countries).
Methodology or Methods: Consequently, most people in Africa view cancer as a death sentence and delay seeking medical care when discovering early signs and symptoms due to denial, anxiety, paranoia, fear, and unsavory experiences. The challenge is further compounded by poor capacity of front-line medical practitioners to provide appropriate counselling and messaging for patients and their immediate circle of relations.
Impact on practice or Results: Role of Psycho-Oncology in comprehensive cancer care and UHC
Psycho-oncology, a recognized field of practice improving outcomes, is still nascent in Africa and often absent in routine cancer management. With the Sustainable Development Goals, all countries committed to achieving universal health coverage (UHC) by 2030. Psycho-oncology has a unique role in this agenda by ensuring better treatment outcomes and promoting quality cancer care at all stages of the cancer continuum. Through effective communication, including factual elements and empathy, we can also impact utilization of prevention and control interventions.
Discussion or Conclusions: IPOS and WHO are uniquely positioned to promote comprehensive cancer care including adaptation of national guidelines to resource-limited settings.
S3-741 History and evolution of psycho-oncology in Africa and the role of IPOS in its development
Ibadan University, Ibadan, Nigeria
Background/rationale or Objectives/purpose: Psycho-oncology is the psychosocial management of cancer patients in order to reduce stress, enhance their coping strategies and improve their quality of lives along the cancer care continuum. The field started in Nigeria in the early nineties through the initiative of Professors Campbell, Jude Ohaeri and Dr Tony Marinho.
Methodology or Methods: This initiative was revived and enhanced in 2004 through the efforts of Prof Chioma Asuzu. In 2008 the Psycho-Oncology Society of Nigeria (POSON) was formed with the aims of development, promotion, enhancement, research and training in order to improve the quality of life of cancer patients and their caregivers with the guidance of Dr Jimmie Holland.
Impact on practice or Results: Psychosocial Care in Ibadan is based on an altruistic model. POSON organizes yearly psychosocial conferences all over Nigeria. The association became a member of the Federation of Psycho-Oncology Societies in 2011. With the continued support of Jimmie Holland the IPOS Association for Psycho-Oncology in Africa (APOA) was inaugurated in 2013 in Durban and the second conference of APOA was held in Nairobi, Kenya. The unit of Psycho-Oncology was established in the Department of Radiation Oncology, Department of Clinical Sciences, College of Medicine, University of Ibadan, Ibadan. This unit developed a Master's programme in Psycho-Oncology.
Discussion or Conclusions: IPOS has contributed immensely to the growth and development of Psycho-Oncology in Africa through training academies, which have been organized in the various parts of Africa.
S3-367 A knowledge translation framework that has been useful in guiding training initiatives and adapt psychosocial clinical guidelines to LMI countries: Communication skills training in Africa
Melissa Henry1, Sharon Nichols2, Jennie Hwang3, Ali Alias1, Scott Nichols4, Philip Odiyo5, Chioma Asuzu6, David Kissane7, Maggie Watson8, David Lounsbury9
1McGill University, Montreal, Canada;2Nichols Entrerprises, Chico, USA;3Université de Montréal, Montreal, Canada;4Enloe Medical Centre, Chico, USA;5Faraja Cancer Support Trust, Nairobi, Kenya;6Ibadan University, Ibadan, Nigeria;7Monash University, Melbourne, Australia;8University College London, London, United Kingdom;9Albert Einstein College of Medicine, New York, USA
Background/rationale or Objectives/purpose: Clinical practice guidelines have mostly been developed in high income countries and may need modifications to be culturally-relevant to the LMI country context. We used a knowledge translation framework to better understand communication practices and needs around breaking bad news to adult and pediatric populations in African oncology settings, with a focus on identifying barriers and facilitators to breaking bad news.
Methodology or Methods: A World Café methodology was used to gather qualitative data for this study. The World Café was conducted in English and comprised 114 professionals working in oncology in Africa.
Impact on practice or Results: Participants underlined the centrality of good doctor-patient communication in optimizing outcomes. Barriers and facilitators to communication included: medical setting structure and scarce access to specialists; shortage of staff; workload and time; language, level of education, and socio-economic disparities in understanding; fear of demoralizing the patient; belief around what children understand and their degree of involvement in medical care and decision-making; the need for age-appropriate communication; cultural and religious beliefs; stigma surrounding cancer causes; and the central role of family and cultural traditions.
Discussion or Conclusions: Our study suggests the need to adapt guidelines to the African context to disseminate communication skills training in a culturally relevant way. Conjunctly, within this context it appears important to embed parallel public health strategies and health care structural changes to mitigate any unintended effects of cancer diagnosis disclosure on patients and families. As IPOS pursues its mission to translate knowledge in the LMI country context, particular attention is required to culture and context.
S3-744 Stewardship for access to psycho oncology services
University Hospital Charité Berlin, Berlin, Germany
Background/rationale or Objectives/purpose: There is urgent need to increase national capacity to provide palliative care (PC) and psycho-oncology services (PO) in the African region. With increasing national cancer control planning (NCCP) in this region there is a risk that PO and PC are neglected. It requires therefore strategic positioning at decision making level to increase PO and PC capacity and to develop innovative partnerships.
Methodology or Methods: There are several windows which offer IPOS to disseminate PO knowledge timely into national health service planning: IPOS is (1) official partner of WHO with unique credentials at governmental level, IPOS platform and expert network offers knowledge transfer which is essential for the implementation of key elements of the Wold Health Assembly Resolutions on (2) cancer control and on (3) palliative care.
Impact on practice or Results: The increasing awareness in the African region that cancer is a public health problem which deserves attention has led to national coordination in cancer planning under the stewardship of governments and their partners such as WHO, other UN organisation NGOs and academia. IPOS is undertaking major efforts to get into dialogue at governmental level so that NCCP includes PO into national curricula of health care providers.
Discussion or Conclusions: It will be crucial for IPOS to use the windows of opportunities in a strategic way and to seek cooperation e. g. with existing north south platforms such as hospital partnership programs for which the German Government Hospital partnership program is an example. The university hospital Charité Berlin is increasingly active as resource for global cancer management and PO.
S4 Improving the evidence base for Acceptance and Commitment Therapy (ACT) in psychosocial oncology
University of Sydney, Sydney, Australia
Psychological distress and poor quality of life are commonly reported in people affected by cancer. This includes those who have received a diagnosis, their families and caregivers, and healthcare professionals working in this setting. Though there is a good deal of published data from cross-sectional questionnaire studies on the applicability of the ACT model in the oncology and palliative care settings, longitudinal and intervention-based research is sparse. This symposium includes a presentation of data from the latest phase of an international cohort study which aims to model which ACT components may be most relevant at different times of the survivorship pathway, and for which different patient-reported outcomes; this kind of conceptual mapping study is crucial in the development of patient-centred and data-driven interventions. The second paper reports on outcomes of an ACT-based intervention for adolescents impacted by cancer (the PEER Program). This study is important as it explores not only outcome improvements, but also mediators of those improvements. The final presentation discusses the relevance of single-subject research designs in psycho-oncology, drawing on two ACT-based interventions (the BEACHeS and ACTION intervention studies) as examples.
S4-85 The Place of Enablement, Empowerment, and Relationships (PEER): does an ACT-based program help highly distressed adolescents impacted by cancer?
Pandora Patterson1,2, Fiona E.J. McDonald1,2, Helen Bibby1
1CanTeen Australia, Sydney, Australia;2University of Sydney, Sydney, Australia
Background/rationale or Objectives/purpose: A personal or familial cancer diagnosis can have a substantial negative impact on an adolescent's distress level and quality of life. A manualised 4-day therapeutic program (Place of Enablement, Empowerment and Relationships; PEER) was developed for adolescents impacted by cancer, based on Acceptance and Commitment Therapy (ACT). ACT was chosen as a framework due to its focus on increasing psychological flexibility and the capacity to cope with difficult thoughts and feelings. We examined the impact of PEER on a clinical subset of adolescents with high or very high distress levels and explored the mechanism of effect.
Methodology or Methods: PEER was evaluated over a one-year period across six programs (n = 153). Program effectiveness was assessed at three-time points using measures of distress and quality of life. Mediation analyses explored the possible role of: sense of belonging; psychological inflexibility; mindfulness; and self-compassion in the process of change.
Impact on practice or Results: 80 attendees (52.3% of the total sample) scored in the clinical range for distress. The clinical subset were aged 12-17 years (m = 15.3, sd = 1.5) and 75% were female. They experienced significant improvements in distress (p < .001) and quality of life (p = .012) after PEER. Changes in quality of life were mediated by improvements in distress (β= 0.77, 95% CI: 0.40, 1.20), psychological inflexibility (β= 0.21, 95% CI: 0.002, 0.442), and self-kindness (β= 0.26, 95% CI: 0.04, 0.52).
Discussion or Conclusions: These results demonstrate the benefits of an act-based program for adolescents who are impacted by cancer and experiencing clinical levels of distress.
S4-83 Developing data-driven psychosocial interventions using process-modelling studies: improving our knowledge of ACT-based outcome prediction
Nicholas J. Hulbert-Williams1, Lee Hulbert-Williams1, Brooke Swash1,2, Rosina Pendrous1, Fiona E.J. McDonald3,4, Lesley Storey5, Melissa Pilkington6, David Gillanders7, Sylvie Lambert8, Pandora Patterson3,4
1University of Chester, Chester, United Kingdom;2University of Cambridge, Chester, United Kingdom;3CanTeen Australia, Sydney, Australia;4University of Sydney, Sydney, Australia;5Queen's University, Belfast, United Kingdom;6Manchester Metropolitan University, Manchester, United Kingdom;7University of Edinburgh, Edinburgh, United Kingdom;8McGill University, Montreal, Canada
Background/rationale or Objectives/purpose: Previous literature demonstrates the potential effectiveness of Acceptance and Commitment Therapy (ACT) for cancer survivors. Cross-sectional studies highlight significant correlation between ACT processes and patient-reported outcomes, but longitudinal data are lacking. This cohort study explores prediction of distress, quality of life, benefit finding and fear of recurrence from naturally-occurring variation in ACT processes.
Methodology or Methods: 200 participants were recruited using social media; our sample is demographically and clinical heterogenous. Participants complete online questionnaires assessing ACT processes and outcome measures every three months for two years. 60% of our sample have so far completed six-month follow-up.
Impact on practice or Results: Cross-sectional analysis indicates high correlation between process and outcome variables. Effects remain statistically significant after controlling for demographic and clinical variables, using both baseline (r2range = .168 to .560, p < .001) and three-month (r2range = .205 to .435, p < .05) outcome data. Six-month follow-up data collection will complete in spring 2019. Analyses testing whether change scores on ACT processes measures (baseline to three-month follow-up) predict later changes (three- to six-month time point) in outcome will be presented.
Discussion or Conclusions: Comprehensive theoretical modelling of longitudinal psychological adjustment is a necessary step in effective intervention development. Our findings replicate previous cross-sectional literature; by identifying the consequences of changes in these ACT processes over time, we will identify targets for potentially effective intervention. Ground-up, data-driven approaches such as this are necessary in developing more patient-led, clinically- and cost-effective interventions.
S4-84 Using Single-Subject Research Designs to develop effective and acceptable intervention content: results from two ACT-based coaching intervention studies
Nicholas J. Hulbert-Williams1, Anne Finucane2, David Gillanders3, Kevin D. Hochard1, Lee Hulbert-Williams1, William Kent1, Joseph Kreft1, Sue Millington4, Sabrina Norwood1, Juliet Spiller2, Jenny Strachan2, Brooke Swash1,5
1University of Chester, Chester, United Kingdom;2Marie Curie UK, Edinburgh, United Kingdom;3University of Edinburgh, Edinburgh, United Kingdom;4Patient Representative, Chester, United Kingdom;5University of Cambridge, Cambridge, United Kingdom
Background/rationale or Objectives/purpose: Despite increasing numbers of published intervention studies in cancer settings, implementation is poor. This may be because methodological quality issues remain, and insufficient development work is undertaken prior to efficacy testing (Hulbert-Williams et al, 2018). Single-Subject Research Designs (SSRDs) offer a participant-focused methodology commensurate with phase i intervention development study aims. We review the adoption of SSRDs in two ACT-based coaching studies in psychosocial oncology settings: (i) ACTION, a stress-management intervention for oncology nurses; and (ii) BEACHeS, an intervention for people with cancer transitioning into specialist palliative care.
Methodology or Methods: A multiple-baseline SSRD was used in both studies. ACTION is a three-session intervention delivered to groups of oncology nurses (n = 8). BEACHeS is delivered individually to people with a terminal cancer diagnosis over five sessions; we have recruited 9 participants, however 4 have withdrawn due to deteriorating health. Both studies used mixed-methods data collection, including daily diary recordings for maximised sensitivity, weekly assessments using validated psychometric scales, and qualitative interviews for acceptability data.
Impact on practice or Results: Though trends towards outcome improvement are noted, Tau-u calculations failed to indicate statistical significance in either study. There are multiple possible reasons: unstable pre-intervention baselines; measurement floor/ceiling effects; and, participant referral difficulties, including gatekeeping. Qualitative data indicate that content is valued and appropriate.
Discussion or Conclusions: These studies are vital first-steps in developing effective act-based coaching interventions for cancer settings. They indicated acceptability and potential efficacy, though more research is needed addressing methodological limitations prior to full feasibility and efficacy trials.
S5 Preventing disease and distress in cancer: Psychosocial approaches to primary and secondary prevention
Kevin Stein, PhD
Cancer Support Community, Philadelphia, USA
Research in recent years has expanded our knowledge base into effective primary and secondary interventions in oncology. We now know that preventive behaviours associated with cancer risk are amenable to modification on both individual and population levels. In this symposium, we will present several papers focusing on psychosocial factors and approaches relevant to prevention and public health in reducing cancer risk. Dr. Joan Bottorff will discuss research she has carried out to reduce smoking rates in hard to reach indigenous populations. Dr. Gilla Shapiro will present on policy issues that influence parents’ decision-making regarding acceptance of the Human Papillomavirus (HPV) vaccine for their young children. Dr. Rosberger will present data exploring the nature of ‘anti-vaxxers’ by identifying subtypes of HPV vaccine hesitant parents which have obvious implications for tailoring interventions to enhance uptake. Dr. Kevin Stein will present an innovative program for distress screening using unique validated measures at the community level, with links to health care professional though a web-based portal. Together these projects underscore the importance of developing and evaluating screening/assessment tools and novel interventions to address challenges faced by people at risk in the community for developing cancer (primary prevention) and those already diagnosed with cancer and being treated and managed for physical and/or psychosocial symptoms (secondary prevention).
S5-425 Gender-sensitive smoking cessation support for Indigenous fathers
Joan Bottorff1, Gayl Sarbit1, John Oliffe2, Cristina Caperchione3, Anne Huisken1
1University of British Columbia (Okanagan campus), Kelowna, Canada;2University of British Coumbia, Vancouver, Canada;3University of Technology Sydney, Sydney, Australia
Background/rationale or Objectives/purpose: There is an urgent need for tailored smoking cessation programs to prevent cancer in Indigenous communities. The purpose of this qualitative participatory study was to design a tailored smoking cessation program for Indigenous fathers.
Methodology or Methods: In phase 1, 21 Indigenous fathers, elders and other key informants were consulted to gather advice related to supporting fathers’ cessation. The findings were used to guide the development of program prototypes. In phase 2, the prototypes were evaluated in focus group discussions. Data were analyzed inductively, and main topics and themes summarized to inform program development.
Impact on practice or Results: Support for fathers’ smoking cessation was linked with promoting cultural values and practices to advance men's cultural knowledge, and the evolving role of fathers in Indigenous communities. Men emphasized the importance of positive message framing, building trust by providing “honest information,” and including activities that enabled discussions about their aspirations as fathers as well as cultural expectations of current day Indigenous men. Their discussion also reflected important differences in father engagement between Indigenous men and contemporary ‘involved fathering’ discourse, and the need for less prescriptive program content to acknowledge and support men's diverse levels of involvement with their children.
Discussion or Conclusions: The findings of this study were used to inform the development of a novel, gender-sensitive approach to supporting smoking cessation and promoting men's health (www.dadsingearindigenous.ca). The findings hold implications for supporting smoking cessation among Indigenous men in other countries who have experienced a similar history of colonization and tobacco use.
S5-477 Implementing the Standard of Care: Innovation in Community-Based Screening for Cancer-Related Distress across Populations
Kevin Stein, Melissa Miller, Susan Ash-Lee, Sara Goldberger, Shauna McManus, Alexandra Zaleta
Cancer Support Community, Philadelphia, USA
Background/rationale or Objectives/purpose: Since 2008, Cancer Support Community (CSC) has been investigating the feasibility and effectiveness of screening, referral and follow-up for cancer-related distress and unmet needs through the development, validation, and application of the CancerSupportSource® (CSS) program, including psychometrically validated instruments and automated referral systems. In addition to a patient version, the program has also been adapted for use with cancer caregivers (CSS-CG), and pediatric oncology patients (CSS-PEDs).
Methodology or Methods: The CSS instrument for patients is offered in 25 and 15-item forms, including a Spanish-language adaptation. Participants rate their level of concern (0-4). CSS allows for easy identification of respondents’ top concerns and includes subscales that can identify individuals at risk for clinically significant levels of depression and anxiety. The CSS-CG tool includes 33 items assessing emotional well-being, self-care, caregiving tasks, and patient well-being. The CSS-PEDs is under development in partnership with the National Cancer Institute and is undergoing feasibility testing.
Impact on practice or Results: CSS is a valid, flexible program that, when fully implemented, automatically generates reports for clinicians and respondents that include tailored information based on respondents’ identified concerns. The web-based platform allows for flexibility with secured data management to ensure HIPAA compliance and integration into electronic medical records.
Discussion or Conclusions: The screening, referral, and management of distress and unmet needs in the cancer context is an integral part of quality cancer care. This presentation will highlight the development and application of distress screening at the community level. Future research will document the impact of screening for distress on psychosocial, clinical, and cost of care outcomes.
S5-639 Who are the ‘Anti-Vaxxers’? Characteristics of “Flexible” and “Rigid” HPV Vaccine Hesitant Parents
Zeev Rosberger1,2, Ovidiu Tatar1, Samara Perez1, Gilla K. Shapiro3, Kristina Wade2
1Lady Davis Institute for Medical Research, Montreal, Canada;2McGill University, Montreal, Canada;3Princess Margaret Cancer Centre, Toronto, Canada
Background/rationale or Objectives/purpose: Background Vaccine hesitancy is an increasingly prevalent phenomenon world-widee. The WHO SAGE Working Group conceptualizes vaccine hesitancy as a continuous refusal process, rather than a dichotomous behaviour (yes/no), and defines it as a “delay in acceptance or refusal of vaccination despite availability of vaccination services”. The present study provides a more fine-tuned understanding of hesitancy using a stage-based perspective of HPV vaccine attitudes and beliefs in Canadian parents of boys and girls.
Methodology or Methods: Methods Using an online survey, we collected longitudinal data on HPV vaccine knowledge, attitudes and beliefs from a nationally representative sample of parents of HPV vaccine eligible children in September/2016) and July/2017).
Impact on practice or Results: Results Parents were asked whether they were in either unaware, unengaged, undecided, decided not, decided to, or already vaccinated stages. Most decided not parents (“rigid” hesitant) at Time 1 (∼70%) remained decided not at Time 2 and < 10% changed to decided to or vaccinated. In contrast, more parents who were unengaged or undecided at Time 1 (“flexible” hesitant) changed to decided to or vaccinated at Time 2 (30% parents of boys; 42% parents of girls); those who changed reported more significant favorable attitudes (e.g., benefits) when compared to those who did not change stage. At Time 2, influence from significant others and healthcare providers (OR's ≥ 2.95), and perceiving more harms (OR's ≤ 0.61), were significantly associated with decided to or vaccinated stages in parents who transitioned from “flexible” hesitant at Time 1.
Discussion or Conclusions: Conclusion ‘Anti-vaxxers’are not all (always) hesitant. “Flexible” and “rigid” hesitant parents will require unique and innovative targeted intervention strategies to improve acceptability and uptake.
S5-646 The impact of government funded HPV vaccine programs on parents’ knowledge, attitudes, and behaviour
Gilla Shapiro1, Ovidiu Tatar2, Zeev Rosberger2
1Princess Margaret Cancer Center, Toronto, Canada;2Jewish General Hospital, Montreal, Canada
Background/rationale or Objectives/purpose: Human papillomavirus (HPV) vaccine uptake is critical for cancer prevention efforts. Funding for school-based HPV vaccine programs in Canada is decided provincially. Only Alberta, Prince Edward Island, and Nova Scotia implemented HPV vaccine programs for boys by 2017. We evaluated the relationship between having a funded HPV vaccine program (or not) on parents’ HPV vaccine knowledge, HPV vaccine attitudes, and their son's HPV vaccine uptake.
Methodology or Methods: We collected online survey data from a national sample of Canadian parents of 13 to 16-year-old boys from August to September 2017. Participants completed a questionnaire reporting socio-demographics, HPV vaccine knowledge and attitudes, and whether their son received the HPV vaccine.
Impact on practice or Results: 963 parents completed the survey. More sons of parents in funded provinces received the HPV vaccine (41.38%) compared to sons in non-funded provinces (11.45%). Parents in funded provinces had significantly greater HPV vaccine knowledge, and significantly stronger beliefs that the HPV vaccine is affordable and accessible. There was no significant difference in parents’ perceptions (between funded and non-funded provinces) regarding HPV susceptibility, HPV severity, or the benefits of HPV vaccination.
Discussion or Conclusions: Parents in provinces with HPV vaccine funding reported increased HPV vaccine knowledge, fewer constraints related to vaccination, and greater likelihood that their son was vaccinated. All Canadian provinces and territories have now implemented universal vaccination programs for girls and boys, which hassignificantly improved uptake. Our results highlight the complex interplay of psychosocial and behavioural factors with policy decisions, which continue to challenge these programs to reach coverage targets
S6 Support pain and anxiety using techniques derived from hypnosis: Clinical and research perspectives in adult and pediatric cancer patients
Department of Hematology-Oncology, CHU Sainte-Justine, Montréal, Canada
During cancer treatments, patients are exposed to pain and emotions which are important to manage. Among the non-pharmacological alternatives, studies have shown the efficacy of hypnotic techniques. However, evaluation studies are complex due to the importance of assessing hypnotic techniques acquisition before efficacy trials. In this symposium, we will focus on clinical and research aspects of hypnotic skills development in pediatric and adult oncology.
In the first presentation, we will address a clinical model of skill acquisition in techniques derived from hypnosis. Clarisse Defer will present a self-hypnosis group training for adult cancer patients that aims to reduce physical and psychological symptoms associated with the disease. This clinical protocol was evaluated for feasibility and will be the subject of competency development studies in patients. These researches will be a collaboration with the pediatric oncology research team who will present the following two interventions. Jennifer Aramideh and David Ogez developed a clinical and research protocol (Hypno-Dis) to train and assess the development and acquisition of hypnotic communication skills in pediatric oncology nurses to reduce young cancer patients’ pain and procedural distress. In the second intervention, Jennifer Aramideh will present the training and the results of the study evaluating nurses’ hypnotic communication skills. Finally, the third intervention will highlight the impact of these hypnotic communication skills on the daily clinical practice. David Ogez will report the implementation study's results of the use of hypnotic communication techniques during venipunctures conducted in a pediatric oncology daycare clinic.
S6-356 Effects of a hypnosis derived communication techniques training for pediatric nurses on oncology patients’ pain and distress
David Ogez1,2, Jennifer Aramideh1,2, Terry Mizrahi1, Marie-Claude Charest1, Caroline Plante1, Michel Duval1,3, Serge Sultan1,2,3
1Department of Hematology-Oncology, CHU Sainte-Justine, Montreal, Canada;2Department of Psychology, Université de Montréal, Montreal, Canada;3Department of Pediatrics, Université de Montréal, Montreal, Canada
Background/rationale or Objectives/purpose: To evaluate the efficacy of a hypnotic communication (HC) training for pediatric nurses in decreasing patients’ pain and distress during venipunctures.
Methodology or Methods: A 4-day theoretical and practical HC training was offered to 6 pediatric oncology nurses (33 ± 6 years) to improve the quality of patient care. HC efficacy was tested with 33 cancer patients (16 boys, 17 girls, 10 ± 4 years). Venipunctures were video-recorded during 4 time-points (2 pre- and 2 post-training). Patients’ pain and distress were assessed with visual analogue scales in a self-reported manner and reported by a parent. Based on the recordings, patients’ observed pain was assessed using the FLACC scale.
Impact on practice or Results: Results showed the importance of mastering HC skills. No significant results were observed for nurses who lacked HC competencies. However, results showed a reduction in patients’ self-reported pain (Z = -2.201, p = 0.028, d = 1.03), parents perceived pain (Z = -2.032, p = 0.042, d = 1.09) and distress (Z = -2.023, p = 0.043, d = 1.05) as well as observed pain (Z = -2.243, p = 0.025, d = 1.22) in pre-post-training for nurses with better skills acquisition.
Discussion or Conclusions: Nurse-led HC is a promising avenue to alleviate pediatric patients’ pain and distress. For the first time, this study shows a link between nurses’ HC skills and patients’ objective outcomes. Since nurses are able to master HC skills and that these competencies appear to prevent children's pain and distress, this training could be implemented in a broader population.
S6-358 Training pediatric oncology nurses in hypnosis derived communication techniques: A feasibility study
Jennifer Aramideh1,2, David Ogez1,2, Terry Mizrahi1, Marie-Claude Charest1, Caroline Plante1, Michel Duval1,3, Serge Sultan1,2,3
1Department of Hematology-Oncology, CHU Sainte-Justine, Montreal, Canada;2Department of Psychology, Université de Montréal, Montreal, Canada;3Department of Pediatrics, Université de Montréal, Montreal, Canada
Background/rationale or Objectives/purpose: (1) To assess pre-post-follow-up changes in nurses’ communication behaviours during nurse-patient interactions following a hypnotic communication (HC) training. (2) To obtain nurses’ comments on the training program.
Methodology or Methods: Six female pediatric oncology nurses (33 ± 6 years) and 33 cancer patients (16 boys, 17 girls, aged 10 ± 4 years) participated in this study. Nurses took part in a 4-day theoretical and practical HC training. Data collection was carried out in 4 time-points (2 pre and 2 post-training). Venipunctures were video-recorded and nurses’ communication behaviours were assessed using the Sainte-Justine Hypnotic Communication Assessment Scale (SJ-HCAS), which evaluates the relational and technical aspects of HC (109 nurse-patient interactions assessed). Interviews were conducted with each nurse to gather comments on the training. Non-parametric analyses and qualitative thematic analysis were conducted on the SJ-HCAS and on interviews’ transcripts, respectively.
Impact on practice or Results: Results showed changes in pre-post-training behaviours, with a significant increase use of HC (pre-post: Z = -3.138, p = 0.002, d = 0.74), with changes remaining at follow-up (pre-follow-up: Z = -3.614, p < 0.001, d = 0.97). A stability between post and follow-up data points was observed. In regards to the interview analyses, nurses recommended that the training be more focused on the practice in outpatient clinics and offer more practical exercises.
Discussion or Conclusions: A brief training can allow pediatric oncology nurses to master HC techniques. This study's results suggest that nurses could be trained in non-pharmacological interventions to prevent patients’ pain and distress during medical procedures.
S6-376 Definition and feasibility assessment of a self-hypnosis group training program in adult oncology. A mixed study involving patients and caregivers
Clarisse Defer1, Rock-André Blondin2,1, Ghassan El-Baalbaki2, David Ogez3,4
1Department of Oncology, Hôpital Maisonneuve-Rosemont, Montréal, Canada;2Department of Psychology, Université du Québec à Montréal, Montréal, Canada;3Department of Hematology-Oncology, CHU Sainte-Justine, Montréal, Canada;4Department of Psychology, Université de Montréal, Montréal, Canada
Background/rationale or Objectives/purpose: Research showed that self-hypnosis group training in adults with cancer is both useful and effective. These programs are often complex and designed only for specific patient (e.g., breast cancer patients), rarely including caregivers. We therefore defined a simplified self-hypnosis group training program for a large audience of cancer patients and their families. We aim to define this program and study its feasibility with users.
Methodology or Methods: Fourteen people (10 patients and 4 relatives) participated in 4 program-sessions (1 psycho-education session of 2 hours on self-hypnosis and 3 training sessions of 1.5 hours in self-hypnosis techniques). Each session includes exercises and exchanges on participants’ experiences. Written and audio materials are provided to support independent practice. In post-intervention, each participant completed a questionnaire to assess the program's acceptability (4 themes: general appreciation, impact on psychological and physical well-being, desire to continue, competence acquired).
Impact on practice or Results: The results showed a high acceptability of the program (M = 5/5), benefits on patients’ psychological (M = 4,64/5) and physical (M = 4,46/5) well-being, and an important motivation to pursue a practice independently (M = 5/5). Suggestions for improvement involved an additional session and strategies to facilitate the enhancement of learning.
Discussion or Conclusions: A simplified self-hypnosis group training program helps patients and caregivers. This feasibility study showed the benefits of the techniques learned and the improvement of patients’ psychological and physical well-being. The next steps will be a pilot study that will more objectively assess changes in our key outcomes (emotional and physical distress) and prepare a randomized study with different health centers across Canada.
S7 How can physical activity be implemented in cancer care?
Cumming School of Medicine, Calgary, Canada
This 90-minute symposium incudes speakers from Canada, Finland and the United States, who will speak to the logistics of implementing various elements of physical activity for cancer patients and survivors in clinic and community settings. Specifically, from Finland Dr. Hamari will present on the role of the physical therapist in the clinical setting and the implementation of exercise in pediatric oncology. From the United States, Dr. Sohl will present on the viability of yoga during cancer treatment, with work on implementation of yoga protocols in the clinical setting. Finally, from Canada, Dr. Culos-Reed will present on exercise in the community-setting, using the Alberta Cancer Exercise program, Yoga Thrive, and the TrueNTH Lifestyle Management project as examples of sustainable models for implementation.
S7-762 What can exercise for cancer survivors look like in community-based settings? Examples from work in Alberta
Cumming School of Medicine, Calgary, Canada
Background/rationale or Objectives/purpose: Evidence supports the benefits of regular physical activity for improving fitness, quality of life and survival outcomes in cancer survivors. Based on this evidence, numerous organizations (ACSM, ACS, COSA) have established exercise guidelines and physical activity recommendations for cancer survivors. However, a gap remains in translating this evidence into sustainable exercise oncology programs and resources available in clinic and community settings.
Methodology or Methods: The Alberta Cancer Exercise (ACE) program, Yoga Thrive, and TrueNTH Lifestyle Management – are designed to be implemented as sustainable community-based programs. ACE is an ongoing implementation and effectiveness research program, with the goal of supporting exercise as part of standard cancer care. With five years of funding, ACE is offered in the community as a free 12-week exercise program. Measures (fitness, patient-reported outcomes, medical) occur at baseline, post-ACE program (12-weeks), 24 weeks and one year. Data will support the benefits, as well as economic implications, of ACE as part of standard cancer care.
Impact on practice or Results: Yoga Thrive is a 12-week fee-based yoga program to enhance quality of life in survivorship. Yoga Thrive research includes implementation in men with prostate cancer, with children with cancer, and in mechanism studies to understand how potential benefits are achieved through changes in affect and attention. This research highlights the benefits of yoga in cancer survivorship and is used to enhance the training of yoga therapists in the delivery of the Yoga Thrive program. The result is a safe, beneficial sustainable community-based program for cancer survivors.
TrueNTH Lifestyle Management (TNLM) is an international program, supported by the Movember Foundation and Prostate Cancer Canada, to deliver wellness resources to men with prostate cancer. TNLM combines online resources and community-based programs, delivering exercise, yoga and nutrition resources to enhance the quality of life for prostate cancer survivors.
Discussion or Conclusions: These models offer unique insights into how sustainable programs can be delivered for cancer survivors in community-based settings.
S7-761 The role of physical therapists in pediatric oncology exercise guidance in Finland
University of Turku, Turun yliopisto, Finland
Background/rationale or Objectives/purpose: Promotion of physical activity (PA), is suggested to be included at the initial phase of the treatment but also at different stages of the care chains. The aim of the Pediatric Oncology Exercise Guidelines in Finland (POEG-Fi) project is to improve PA guidance and equalize pediatric cancer physical therapy (PT) practices.
Methodology or Methods: Methodology followed the consolidated framework for advancing implementation science (CFIR)
(Damschroder et al. 2009).
Impact on practice or Results: A network involving researchers from academia and PTs (individuals involved, facilitators) in pediatric oncology departments (inner setting) was built. The first agenda was to standardize the minimum amount (2) of PT visits offered to each child and to create educational material (infographics, videos, written material) informing both clinical PT practice in hospital settings and families (intervention characteristics). The first standardized meeting with PT were set at one month from diagnosis including information about PA and assessment of physical function, motor performance and PA habits. During the treatment, the child meets with a PT based on individual needs, and again all patients meet a PT at the end of the treatment (the second standardized visit). This meeting includes the same assessments that were done at the first meeting, along with individualized guidance for future PA. PT's also allocate patients to applicable community-based programs.
Discussion or Conclusions: Regular communication with PTs facilitated each unit's commitment to the iPOEG-Fi project. Future directions include a nationwide evaluation of the changes in the units.
S7-760 Implementing yoga in the clinical setting to empower proactive cancer symptom-management
Wake Forest School of Medicine, Winston-Salem, USA
Background/rationale or Objectives/purpose: Improving the management of acute fatigue and pain during cancer treatment may reduce symptoms that become chronic in a substantial subset of patients. Clinical practice guidelines recommend including non-pharmacological approaches such as yoga in the management of fatigue and pain. Evidence supports the efficacy of yoga during this acute time period for improving psychological outcomes and some preliminary evidence supports the efficacy of yoga for improving physical symptoms. However, most research participants have been women with breast cancer and most interventions offered as group classes. This implementation format creates a barrier to participation for many patients who are unintentionally excluded from the study of yoga.
Methodology or Methods: Our approach of investigating yoga in the clinical setting aims to address this implementation problem. We have iteratively developed and investigated the feasibility of protocols to implement yoga during chemotherapy for colorectal cancer and around the time of gynecologic cancer surgery. We have designed simple practices that maintain the key essential elements of yoga: awareness meditation, gentle movement, breathing practices, and relaxation meditation. Attention, comfort, and ease are also highlighted. Our protocol for yoga during chemotherapy primarily aims to reduce fatigue. It consists of four 30-minute in-person sessions taught while participants are in the chair receiving infusions and recommended daily home practice. Our protocol for implementing yoga around the time of surgery primarily aims to reduce pain. It includes giving participants a 20-minute video to watch before surgery accompanied by a telephone call to offer guidance upon request. In addition, an instructor meets with participants individually via videoconferencing after surgery. We recommend that participants practice yoga daily for two weeks after surgery.
Discussion or Conclusions: These intervention designs facilitate inclusion of patients who have barriers to participation in group yoga classes such as symptom burden and may benefit the most. Reducing such barriers may also increase the representativeness of participants. By considering implementation early in the research process during our pilot studies, we ultimately aim to facilitate translation of our interventions to clinical practice. Yoga shows promise for being a scalable intervention for proactively reducing symptom burden and improving cancer care.
S8 Cancer-related fatigue: trajectories, associated factors, and interventions
Helen Dowling Institute, Bilthoven, Netherlands
One of the most prevalent side effects of cancer and its treatment is fatigue, characterized by feelings of weakness, exhaustion, and lack of energy. After completion of treatment, one-third of cancer patients suffer from severe fatigue that can persist for months and even years. This cancer-related fatigue (CRF) is a complex, multifactorial condition that is often accompanied by significant distress and reduced quality of life. As the number of cancer survivors is expected to increase considerably in the coming years, a better understanding of CRF and development of effective treatments for CRF are critical.
We present three studies that contribute to a better understanding of CRF and its treatment:
The results of a 12-month prospective cohort study (n = 312), presenting the trajectories and predictors of fatigue among women with newly diagnosed ovarian or endometrial cancer.
The results of network models applied to baseline data of (1) an observational study among patients seeking psychological care (n = 342) and (2) a randomized controlled trial among patients with chronic CRF (n = 167). The complexity of interconnections among fatigue and potential perpetuating and protective factors will be discussed.
The results of a pilot randomized trial (n = 44), discussing (1) the adaptation of a cognitive behavioral intervention for post-cancer fatigue to targeted therapy-related fatigue (CBT-TTF) and (2) the preliminary efficacy of CBT-TTF among patients receiving targeted therapy for chronic myelogenous leukemia.
Recommendations and challenges for both research and clinical practice will be discussed.
S8-398 Trajectories and Predictors of Fatigue in Ovarian and Endometrial Cancer: A 1-Year Longitudinal Study
Hanneke Poort1,2, Belle H de Rooij3,4, Shicheng Weng5, Nicole PM Ezendam3,4, Lonneke van de Poll-Franse3,4,6, Alexi A Wright7,2
1Dana-Farber Cancer Institute, Department of Psychosocial Oncology and Palliative Care, Boston, MA, USA;2Harvard Medical School, Boston, MA, USA;3Netherlands Comprehensive Cancer Organisation, Utrecht, Netherlands;4Tilburg University, Department of Medical and Clinical Psychology, Center of Research on Psychology in Somatic diseases, Tilburg, Netherlands;5Dana-Farber Cancer Institute, Boston, MA, USA;6The Netherlands Cancer Institute, Division of Psychosocial Research and Epidemiology, Amsterdam, Netherlands;7Dana-Farber Cancer Institute, Department of Medical Oncology, Division of Population Sciences, Boston, MA, USA
Background/rationale or Objectives/purpose: Fatigue is one of the most common and distressing symptoms reported by patients with gynecological cancers, but few studies have empirically examined whether it resolves without intervention. We aimed to identify: 1) clinically-distinct subgroups of patients with fatigue over time and 2) predictors of clinically-significant fatigue one-year post diagnosis.
Methodology or Methods: Secondary analysis of a prospective cohort study. Symptoms of fatigue, depression, and anxiety were assessed at diagnosis and 6- and 12-months, with the Fatigue Assessment Scale (FAS), and the Hospital Anxiety and Depression Scale (HADS), respectively. Group-based trajectory modeling was used to classify patients by their fatigue scores over time, and logistic regression models were fit to examine associations between fatigue and demographic, clinical, and psychosocial characteristics. Patients with recurrent of primary progressive cancers were excluded from the analysis.
Impact on practice or Results: Among 312 women with newly diagnosed ovarian (n = 112) or endometrial (n = 200) cancers, the median age was 66 years,36% had ovarian cancer, and 79% had early stage disease. At baseline, 49% reported clinically significant fatigue and one year later, 42% had persistent fatigue. There were three distinct trajectories of fatigue: 1) severe (15%), moderate (45%), and no fatigue (41%). Patients with depressive symptoms at baseline, fatigue at baseline, and 2+ comorbidities were more likely to report fatigue at 12 months.
Discussion or Conclusions: Half of women with gynecologic cancers have fatigue after diagnosis and findings suggest that spontaneous regression of symptoms is rare. Future studies should test psychological interventions to address depressive symptoms, reduce fatigue, and improve quality of life in women with gynecologic cancers.
S8-323 The interconnectedness among cancer-related fatigue, perpetuating and protective factors: the network approach
Melanie Schellekens1, Marije Wolvers1, Tom Bootsma1,2, Angélique Cramer2, Marije van der Lee1
1Helen Dowling Institute, Bilthoven, Netherlands;2Tilburg University, Tilburg, Netherlands
Background/rationale or Objectives/purpose: Several perpetuating and protective factors of cancer-related fatigue (CRF) have been identified. As most studies tested bivariate associations, more insight into the complex relationships among these constructs is needed. We applied the multivariate network approach to gain a better understanding on how patients’ fatigue, perpetuating and protective factors are interconnected.
Methodology or Methods: We estimated regularized, partial correlations networks on cross-sectional baseline data of (1) an observational study among patients seeking psychological care (n = 342) and (2) a randomized controlled trial among patients with chronic CRF (n = 167). The first network included the following perpetuating (physical symptoms, social withdrawal, anxiety, depressive symptoms and helplessness) and protective factors (acceptance, perceived benefits, goal adjustment). The second network included the following perpetuating (sleep problems, depressed mood, anxiety) and protective factors (motivation, perceived and objective physical activity, mindfulness). Centrality (i.e. number and strength of connections of a construct) and stability of the networks were explored.
Impact on practice or Results: The first network revealed that among the strongest connections of the network were fatigue with physical symptoms and fatigue with helplessness. The second network revealed strong connections between both mental and physical fatigue with lower motivation and with lower perceived activity. In both networks, sleep problems was the least central node.
Discussion or Conclusions: The networks identified key connections of fatigue with physical symptoms, helplessness, perceived activity and motivation. Longitudinal studies should explore these perpetuating and protective factors in individual networks to further investigate their causal role and how such networks can inform us on what treatment would be most suitable for the individual cancer patient.
S8-401 Adaptation and Delivery of a CBT-based intervention for Targeted Therapy-related Fatigue in Patients with Chronic Myelogenous Leukemia
Kelly Hyland1,2, Ashley Nelson3, Hanneke Poort4, Paul Jacobsen5, Hans Knoop6, Heather Jim1
1Moffitt Cancer Center, Tampa, USA;2University of South Florida, Tampa, USA;3Massachusetts General Hospital, Boston, USA;4Dana-Farber Cancer Institute, Boston, USA;5National Cancer Institute, Bethesda, USA;6University of Amsterdam, Amsterdam, Netherlands
Background/rationale or Objectives/purpose: Objectives/Purpose: Fatigue is a common and disabling side effect of targeted therapies such as tyrosine kinase inhibitors (TKIs) used to treat chronic myelogenous leukemia (CML). The current presentation will discuss the development of a cognitive-behavioral intervention for fatigue due to targeted therapy and present the results of a pilot randomized trial testing the intervention.
Methodology or Methods: Methods: In-depth interviews were conducted with CML patients and health care professionals to solicit feedback on the adaptation of a cognitive behavioral intervention for post-cancer fatigue (CBT-PCF) to targeted therapy-related fatigue (CBT-TTF). For the trial, CML patients treated with a TKI and reporting moderate to severe fatigue were recruited and randomized 2:1 to receive CBT-TTF delivered via Facetime for iPad or waitlist control. Treatment was tailored to address patient-specific precipitating and perpetuating factors associated with fatigue (i.e., sleep/wake rhythm, activity, unhelpful thinking). Outcomes were acceptability, feasibility, and preliminary efficacy on fatigue and quality of life. Participants were assessed prior to randomization and post-treatment (18 weeks later).
Impact on practice or Results: Results: Forty-four patients (mean age 55, 48% female) were assigned to CBT-TTF (n = 29) or waitlist control (n = 15) (participation rate:59%). Among patients assigned to CBT-TTF, 79% completed the intervention. Intent to treat analyses indicated that patients assigned to CBT-TTF demonstrated significantly greater improvements in fatigue (d = 1.06, pd = 1.15, p = 0.005) than those assigned to waitlist control.
Discussion or Conclusions: Conclusions and Clinical Implications: Results of this pilot randomized trial indicate that CBT-TTF displays preliminary efficacy in improving fatigue and quality of life among fatigued CML patients treated with TKIs.
S9 Supporting Cancer Populations in the Digital Age
Mary Jane Esplen
de Souza Institute, University of Toronto, Toronto, Canada
There is an abundance of evidence now for a wide range of approaches to address distress and other symptoms, as well as to provide education and supportive services in the field of psychosocial oncology. As cancer populations continue to grow, access to in- person specialized services that address specific needs becomes increasingly challenging. Technology offers solutions. This symposium will illuminate examples from three research programs that focused on developing and testing approaches of providing psychosocial intervention and support to specific cancer populations.
S9-449 SHAReClinic – Leveraging Digital Health in Supportive Cancer Care
Supportive Care Program, Princess Margaret Cancer Centre, Toronto, Canada; Associate Professor, Dept. of Surgery, University of Toronto, Toronto, Canada
Background/rationale or Objectives/purpose: As the population in Canada ages and cancer mortality rates decrease, growing numbers of patients are requiring supportive care. Concurrently, healthcare spending in Canada is increasing at an unsustainable pace. Accordingly, there is legitimate concern as to whether our healthcare system can provide adequate supportive care services to patients without fundamentally altering its approach to delivery. Digital healthcare is an innovative model of care delivery that has potential to mitigate this healthcare burden. Digital healthcare provides for efficient reach, accessibility, and scalability, all of which are particularly salient to the Canadian setting. While online supportive care interventions are becoming increasingly popular, digital healthcare is still in its infancy requiring significant effort in determining relevant enablers and barriers to successful implementation.
Methodology or Methods: This presentation discusses digital health as an innovative model of supportive cancer care delivery in the face of increasing healthcare demand and limited healthcare resource. Issues related to digital healthcare acceptance, adherence, and attrition will be explored. The online intervention, SHAReClinic, will be introduced as an example of a national digital healthcare approach to supportive care in sexual health.
Impact on practice or Results: This presentation serves to encourage healthcare practitioner awareness of the potential of digital healthcare as a viable mechanism for providing practical and efficient supportive care while maintaining the personalized approach traditionally associated with face-to-face support.
Discussion or Conclusions: Digital healthcare has the potential to transform supportive care services in oncology by offering a care delivery pathway that is acceptable, personalized, effective, and sustainable.
S9-759 A Good Story, Well Told: Digital Storytelling and Film as Psychosocial Tools
University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: In developed countries, generations born after 1980 are described as digital natives never having known a world without computer screens and instant access to the Internet. This communication revolution has led to a fundamental shift in how stories are told and consumed with visual-based storytelling becoming dominant. Digital Storytelling (DST) is a participatory visual media methodology that guides participants in the creation of short films which use a voiceover, images, video, and music to tell an important story from their life. Recently, health researchers and practitioners have begun to use DST in various clinical and research capacities with oncology patients and their families.
Methodology or Methods: This presentation will draw from multiple DST research projects done with cancer patients and survivors of all ages, as well as 10 years of experience with screening and discussing cancer-focused films in-person and online. It will briefly describe the theoretical foundations and process of DST as well as providing examples of patient-created Digital Stories and facilitation techniques that foster deep, meaningful discussions when screening digital media.
Impact on practice or Results: Attendees will gain a deeper understanding of the therapeutic potential of both creating and screening digital media in a psychosocial oncology context.
Discussion or Conclusions: Now that it is significantly easier to record, create, and share stories, it is possible to employ DST tools in therapeutic, pedagogic, and knowledge-generating ways with oncology patients and their families.
S9-758 Supporting oncofertility decision-making through online tools
Royal Women's Hospital, University of Melbourne, Parkville, Australia
Background/rationale or Objectives/purpose: For many cancer survivors fertility is a priority – however, the decision to pursue fertility preservation (FP) is challenging, especially due to the time pressures involved in making the decision in the short time between diagnosis and initiation of cancer treatment. This high-stake, complex decision-making process can impact prognosis (with some choosing less optimal cancer treatment to reduce impact on fertility) and can lead to decisional conflict and regret if are not well-informed. Decision support tools (e.g. decision aids) are effective interventions that that facilitate quality decision-making. However, there are issues around access to information, lack of clinician confidence, and health literacy that can result in negative outcomes.
Methodology or Methods: This presentation will report of the development evaluation and implementation of four decision support tools:
1) An oncofertility decision aid for women with breast cancer designed using low health literacy principles.
2) An oncofertility decision aid for parents of paediatric cancer patients.
3) A fertility calculator - for women with breast cancer and their clinicians - to support treatment decision-making.
4) A Clinical Decision Support System (CDSS) implemented in a tertiary hospital to enable adherence to clinical pathways, policy, and standards of care.
Impact on practice or Results: Technological approaches provide an easily accessible and equitable option to address barriers to oncofertility care and improve psychosocial wellbeing by making it easier in the longer term for patients and clinicians.
Discussion or Conclusions: Although there are challenges in developing online tools, our data demonstrate that technology can improve psychosocial care.
S10 From Foundation to Inspiration: Implementing Screening for Distress (6th Vital Sign) for Optimal Cancer Care-International Leadership Perspectives on Program Development
Barry D. Bultz
University of Calgary, Calgary, Canada
Cancer related distress is now well understood. Despite the inclusion of screening for distress as a standard of care, challenges exist but so do unanticipated leadership opportunities in the programmatic implementation of screening into routine cancer care. To date, over 75 societies, and Cancer related accreditation bodies have endorsed the importance of screening and treating cancer related distress. The important though limited focus on the clinical benefits to patient care and monitoring of Patient-Reported Outcomes further highlights the importance of psychosocial assessment at all stages of cancer care. The foundation of clinical care and voluminous published data now creates a much larger inspirational vision. This is likely to require innovation in systems of health care, including models of integrated interdisciplinary collaborative care to maximize resources thereby being able to address disparities to access to evidence-based psychosocial care. This symposium will lay the foundation for the successful implementation of clinical screening programs and then outline strategies that have been shown to be extremely successful in program quality, growth and resource preservation. There are important implications: (1) for low and high resourced settings. (2) international growth and development of distress screening, (3) its impact on patient care, the cancer care system, and (4) the opportunities for supportive care program development through innovative implementation strategies.
S10-165 How We Can Make Progress in the Implementation of Distress Screening and Early Psychosocial Interventions?
Johns Hopkins School of Medicine, Baltimore, MD, USA
Background/rationale or Objectives/purpose: Background. This presentation reports the experiences of distress screening and early psychosocial interventions in the context of the Standards of Care as defined by the American College of Surgeons (ACoS). Data will be presented on over 3,000 distress screenings from 2017 with 31% being identified for “high distress” and referred to the Life with Cancer© (LWC) that serves the cancer center at the Inova Health System (IHS) in Northern Virginia.
Methodology or Methods: Methods. Investigators developed the Chronic Illness Distress Scale (CIDS) and a Problem Checklist (PCL) that was subjected to reliability and validity testing at the HIS. Later, LWC© monitored the screening process to determine the level of distress and offer appropriate psychosocial programs.
Impact on practice or Results: Results. Reliability of the CIDS was evaluated using Pearson's correlation between the CIDS at time one and two, and a very acceptable correlation of .76 was achieved. Internal consistency was evaluated using Cronbach's alpha with a score of.83 for the CIDS’ seven items. The validity of the CIDS was established with a correlation the Brief Symptom Inventory-18 was .79, p < .01.
Discussion or Conclusions: Conclusions. Based on a review of ACoS site visit data from 2015–2017 of nearly 1,500 cancer centers, this overall approach is comprehensive given the use of a reliable and valid measure in conjunction with the delivery of evidence-based interventions. LWC© received the designation of “Best Practices” in 2015. Next steps include a “repeated measures” approach to document benefit over time, and an examination of the relationship between distress and health care utilization in the United States.
S10-173 Strategic Approaches to Leveraging Biopsychosocial Screening (Distress as the 6th Vital Sign): Growing Programs, Hiring More Staff, Helping More Patients and Families
Matthew Loscalzo, Karen Clark
City of Hope, Duarte, USA
Background/rationale or Objectives/purpose: Although implementation of distress screening has not been globally incorporated into cancer care, data from some programs have demonstrated staffing increases and dramatic reductions in cost when screening and supportive care are provided early in the patient experience. This presentation describes ways that the authors have leveraged screening for program growth and ultimately patient benefit.
Methodology or Methods: Over the past 20 years, screening data from Canada and United States of ∼100,000 patients/families have applied to create a wide variety of successfully tailored clinical programs. What has been less reported is how this same data has been applied to the growth of clinical, educational and research programs.Authors present data that demonstrates dramatic growth in the depth, diversity and number of professional and administrative staff.
Impact on practice or Results: One program expanded from ∼25 to ∼130 professional staff. Screening data was strategically leveraged to raise money from home institutions, donors, foundations and funded research. Finally, in one setting, an outside internationally recognized consultancy firm, demonstrated that comprehensive biopsychosocial screening saved the Institution many millions of operating dollars.
Discussion or Conclusions: Screening, demonstrated by international uptake of Distress as the 6th Vital Sign and new standards, has resulted in screening now being standard of care.Extending the value of population-specific screening is a unique opportunity to enhance/expand essential psychosocial services to the neediest. Robust support for enhanced quality of care and resource preservation now exists but has been poorly communicated. Comprehensive biopsychosocial screening has significant implications for program development, growth, and strategic integration into health care settings.
S10-142 Integrating Digital Patient Reported Outcomes (PROs) into Standard Ambulatory Care Processes: Exploring the outcomes of a provincial implementation
Linda Watson1,2, Eclair Photitai1, Lindsi Chlielewski1, Karey McCann1, Siwei QI1, Louise Smith1
1Alberta Health Services, Calgary, AB, Canada;2University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: Background: Many cancer patients struggle with the physical and emotional effects of their illness and treatment. Measuring these symptoms and patient's overall quality of life through the collection of Patient Reported Outcomes (PROs) is an important facilitator of high quality care. Although evidence that collecting PROs and utilizing them as a part of standard practice improves outcomes and may even extend survival (Basch et al., 2017) wide scale integration of PROs as a standard component of ambulatory cancer care processes has been slow due to technological and operational barriers (Wagle, 2016).
Methodology or Methods: Method: In 2017, CancerControl Alberta (CCA) developed a provincial PRO road map to guide the systematic clinical integration of the collection and use of digital PROs across its 17 ambulatory cancer care facilities. With a strong emphasis on change management, every quarter over 20,000 cancer patients are now impacted in some way by this new clinical process.
Impact on practice or Results: Impact on practice: As simply having electronic PRO reporting does not translate into improved outcomes for the patient or new clinical efficiencies, the primary focus of this work has been to ensure that PRO outputs are reviewed as a meaningful part of clinical processes. This has resulted in improvements in patient experience, clinical outcomes, and clinical efficiencies.
Discussion or Conclusions: Discussion: In this presentation the PRO tools developed will be shared and the discussion will revolve around the impact the use of these digital products have had on patient/provider communication, interdisciplinary care and earlier responsiveness to patient's symptoms and concerns.
S11 Intimate Partner Relationships Across Gender and Illness Continua: Intimacy and Resilience Models
City of Hope-National Medical Center, Duarte, USA
It has long been established that intimate partner relationships are highly influential and become more so in the face of threat and especially health crisis. There are significant health benefits to both partners in committed relationships. But the data also shows that the quality of relationships is crucial to reap such benefits. The four speakers, all pioneers in their fields, will present models of care and new data that focuses on the unique opportunities that cancer presents for intimate partners to make conscious decisions about how they will work together to minimize the negative sequalae of life threatening illness while promoting increased intimacy and mutual resiliency. Dr. Kissane will present data from a recent RCT and then discuss the complex implications of developing and testing interventions to bring about psychological growth in men. Dr. Manne will present data from two couple-focused RCTs of men diagnosed with prostate cancer and women diagnosed with breast cancer to illuminate differences in intimacy processes. Ms. Bitz will present a comprehensive strengths-based psychoeducational model for intimate partners integrated as standard of medical care. Biopsychosocial screening data that includes perception of prognosis simultaneously collected from patient and partner will be presented. Dr. Kamen will present the challenges of engaging and providing essential psychological services for LGBTQ communities and share ways to support intimate couples specifically. Interactivity is at the core of this symposia. Index cards will be distributed throughout the symposium with questions being addressed by the faculty individually and as a panel.
S11-354 “My Partner is My Family”: Assessing the Psychosocial Needs of Sexual and Gender Minority Cancer Patients and Caregivers
University of Rochester, Rochester, USA
Background/rationale or Objectives/purpose: The relationships of sexual and gender minority (SGM) cancer patients may not be acknowledged in care systems designed to serve primarily heterosexual/cisgender (H/C) patients, and psychosocial resources for partners and caregivers of H/C patients may not address the needs of SGM patients and their partners. There is untapped potential to reduce health disparities in SGM cancer patients by involving their partners in care and by developing tailored resources for these couples.
Methodology or Methods: We conducted in-depth semi-structured qualitative interviews with 24 SGM patients seeking cancer care in upstate New York, along with their 24 partners (N = 48 participants). The interview guide included questions about SOGI data collection in cancer care, inclusion of SGM patients’ partners, and recommendations for improving cancer care for SGM patients. Interviews were audio recorded, transcribed, and analyzed using an inductive coding strategy by two independent coders. Codes were then reviewed to derive themes within dyads and across participants.
Impact on practice or Results: Five themes were identified: 1) Disclosure of SOGI in cancer care is typically initiated by the SGM patient. 2) Providers vary in their competence when responding to SOGI disclosures. 3) Provider competence with SOGI is related to provider competence discussing sexuality in general. 4) Caregivers are invisible when disclosure of SOGI does not occur. 5) SGM patients and their caregivers want to be treated with equity.
Discussion or Conclusions: SGM cancer patients most often disclose their identities themselves. Facilitating these disclosures could improve cancer care for SGM patients, enhance the visibility of SGM patients’ partners, and improve provider comfort and competence.
S11-353 Intimate Partner Relationships Across Gender and Illness Continua: Intimacy and Resilience Models
Rutgers Cancer Institute of New Jersey, New Brunswick, USA
Background/rationale or Objectives/purpose: Prostate and breast cancer can both impact gender role norms (e.g., masculinity, feminity) as well as the quality of and intimacy in marital relationships. We have used the Relationship Intimacy Model of Couple Adaptation to Cancer to develop and evaluate couple-based interventions for both patient populations. Our findings have suggested that interventions are more efficacious for couples coping with breast cancer than couples coping with prostate cancer. The goal of this study is use intimacy processes to analyse why.
Methodology or Methods: We compare trials of couple therapy between breast and prostate cancer settings to examine intimacy processes and outcomes.
Impact on practice or Results: Self-disclosure, perceived partner disclosure, and perceived partner responsiveness can increase during IET with potential to increase intimacy. In breast cancer, couples higher in relationship awareness, more relationship talk, higher levels of self-disclosure, and greater perceived partner disclosure were associated with greater intimacy. In prostate cancer couples, pre-treatment holding back was associated with poorer responsiveness, perception that the partner disclosed less, and poorer intimacy.
Discussion or Conclusions: While intimacy processes played a role in both treatments, shame and different stances about erectile dysfunction may induce greater holding back in prostate cancer and pose challenges to the traditional models of intimacy processes. Therapists may wish to consider holding back and address how the couple wants to address ED and shame before beneficial couple therapy in prostate cancer can succeed.
S11-387 Effects of Intimacy-enhancing therapy in couples in the prostate cancer setting
David Kissane1,2,3, Sharon Manne4, Deborah Kashy5, Talia Zaider6, Carolyn Heckman4, Shannon Myers7, Frank Penedo8
1University of Notre Dame Australia, Sydney, Australia;2Weill Medical College of Cornell University, New York, USA;3Monash University, Clayton, Australia;4Rutgers Cancer Institute of New Jersey, New Brunswick, USA;5Michigan State University, East Lansing, USA;6Memorial Sloan-Kettering Cancer Center, New York, USA;7Helen F Graham Cancer Center, Newark, USA;8Sylvester Cancer Center, Miami, USA
Background/rationale or Objectives/purpose: Observational studies of couples where a man has prostate cancer have shown elevated rates of psychiatric disorders for both patients and partners and deteriorating marital satisfaction for partners over time. A couple therapy component of post-prostatectomy rehabilitation has long been considered important. We aimed to test the promotion of intimacy in couple therapy trials.
Methodology or Methods: Intimacy-enhancing couple therapy was designed to promote mutual understanding and support, facilitate constructive discussion of concerns and promote intimacy. A pilot RCT of 71 couples and larger efficacy RCT of 237 couples were used to test this model of couple therapy.
Impact on practice or Results: In the pilot study, no overall main effects for couples were found, but couples who began with fewer personal and relational resources showed significant improvements. In the main study, no main effects were found beyond a short-term increase in relational satisfaction for partners. For couples in longer versus shorter relationships, better psychological adjustment was found.
Discussion or Conclusions: Intimacy-enhancing therapy did not result in the gains hoped for in psychological and relationship outcomes. Complex dynamics are seen across a range of couples. We need more work to identify moderators/mediators of therapy effects and what characteristics of couples predict value in a couple therapy approach. These will be reviewed by the next presenter in this symposium.
S11-413 Maximizing the Inherent Strengths of Couples as the Standard of Medical Care in a Comprehensive Cancer Center: Couples Coping with Cancer Together
Courtney Bitz1, Joanne Mortimer1, Laura Kruper1, Karen Clark1, Ellen Polamero1, Kim Romig1, James Waisman1, Sumanta Pal1, Matthew Loscalzo1, Courtney Vito2
1City of Hope National Medical Center, Duarte, USA;2Optum Care, Las Vegas, USA
Background/rationale or Objectives/purpose: A lack of appreciation for how sex and gender impacts patients/partners can lead to missed therapeutic opportunities and stigma. Research shows that women diagnosed with cancer and their male partners report high levels of distress. Patients have better adjustment and medical outcomes if partners are emotionally supportive. Couples Coping with Cancer Together (CCCT) is the only program that we are aware of that is integrated as the standard of care and prospectively screened over 1,600 breast cancer patients/partners simultaneously for distress.
Methodology or Methods: CCCT integrates gender-strengths-based and strategic interventions including: patient/partner biopsychosocial distress screening, a standardized psychoeducational couple's session prior to initial medical consultation, short-term couples’ counseling, and group intervention.
Impact on practice or Results: The highest endorsed items (moderate/severe/very severe distress) for patients (N = 853) and partners (N = 755) were: Patients-treatment side-effects (55.4%), feeling anxious or fearful (45.5%). Partners-feeling anxious or fearful (29%), worry about future (26.1%). Over 400 patients/partners were anonymously queried for program evaluation: I recommend this program for other patients/partners (Patients 95.4%, Partners 96.8%). Patients/partners diagnosed with metastatic disease (N = 113) completed a perception of prognosis question: 43.4% couples were aligned/56.6% were misaligned. Additional data and analyses will be presented.
Discussion or Conclusions: Within a gender-strengths-based model, differences in patient/partner's natural inclinations when in high distress are formulated as therapeutic opportunities. It is feasible to ask patients/partners their perception of prognosis and results in early identification of misalignments. Participating physicians report CCCT patients/partners can focus more fully on making informed medical decisions as compared to those who do not participate.
S12 Team-up: A collaborative approach to improving lifestyle behaviours of adolescent and young adult cancer survivors in the UK and Canada
University of Toronto, Toronto, Canada
Improvements in survival rates of cancer diagnosed between the ages of 13 and 39 have led to an increasing number of survivors of adolescent and young adult (AYA) cancers living with persistent quality of life challenges well into adulthood. Although the prevalence of AYA cancers remains low the unique needs of this oncology group has gained considerable attention worldwide. AYA survivors are at increased risk for physical and mental health challenges throughout their lives, and these risks may be exacerbated by engaging in health risking-behaviour, such as poor nutrition, physical inactivity, and substance abuse (tobacco use and alcohol consumption). Researchers have begun to explore the needs of AYA specific health behaviours and there is a need for the development of age specific survivorship care lifestyle interventions. Yet barriers to conducting research within the AYA population exist, mainly due to difficulties engaging young survivors within an adult oncology setting and low incidence rates. International collaboration is needed to combine research efforts and address the barrier of sample size. Thus, researchers at the University of Toronto (UofT) and the University College London (UCL) established an international collaborative network of trainees, researchers, practitioners and survivor end-users to continue to support health behaviour change in this population. This symposium will highlight the work of this collaboration aimed at building capacity in AYA survivorship care in the UK and Canada.
S12-583 Lifestyle behaviour and health related quality of life among adolescent and young adult cancer survivors
Abigail Fisher1, Rachael Hough2, Gemma Pugh3
1University College London, London, United Kingdom;2University College London Hospital, London, United Kingdom;3Queen Mary University London, London, United Kingdom
Background/rationale or Objectives/purpose: Adolescent and young adult (AYA) cancer survivors face persistent quality of life challenges and are at risk of a number of comorbidities following the end of treatment. There is growing evidence that lifestyle changes may be effective for protecting AYA cancer survivors from some of these health risks. To determine targets for intervention this study investigated the current lifestyle behaviors of AYA survivors in the UK and the relationship between lifestyle and patient reported outcomes.
Methodology or Methods: A total of 267 AYA cancer survivors aged 13 - 24 years completed a health and lifestyle questionnaire which included measures of physical activity (PA), diet, smoking status, alcohol consumption, sleep quality (Pittsburgh Sleep Quality Index), fatigue (FACIT-Fatigue) and health related quality of life (EQ-5D-5L).
Impact on practice or Results: Less than half of AYAs meet current lifestyle recommendations regarding fruit and vegetable intake (n = 35, 22%) and 54% (n = 85) reported binge drinking, 6% (n = 10) were current smokers and 74% (n = 117) did not meet sun-safe recommendations. AYAs classified as inactive were more likely to report experiencing symptoms of fatigue (OR = 2.46, 95% CI, 1.25–4.8 p = 0.009), poor sleep quality (OR = 2.63, 95% CI, 1.22–5.7 p = 0.014) and poorer overall HRQL (OR = 2.62, 95% CI, 1.08–6.35 p = 0.033).
Discussion or Conclusions: The lifestyles of AYA cancer survivors are generally poor, and in some cases associate with poorer wellbeing. Our findings provide a strong rationale for developing interventions designed to support AYAs to improve their lifestyle behaviours.
S12-584 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.
S12-587 Man to Man: Engaging young male cancer survivors in survivorship care through physical activity
Anika Petrella1, Catherine Sabiston1, Abigail Fisher2, Jemina Reynolds3, Sophie Epstone3, Gemma Pugh4
1University of Toronto, Toronto, Canada;2University College London, London, United Kingdom;3Trekstock, London, United Kingdom;4Queen Mary University London, London, United Kingdom
Background/rationale or Objectives/purpose: Engagement from men in survivorship interventions targeting adolescent and young adults’ (AYA) health and quality of life has been strikingly low. Tailoring interventions to young men through gender-sensitized approaches may increase accessibility, acceptability, and overall satisfaction with intervention models. To inform the development of tailored interventions, a series of studies were carried out with male AYAs in the UK and Canada. Proof of concept interventions were then carried out in each location.
Methodology or Methods: Qualitative data from a focus group (n = 20) conducted in the UK and individual interviews (n = 11) in Canada explored how to best reach and engage male AYAs in survivorship programming, as well as receive feedback on a gender-sensitized model for program delivery that focused on social support and physical activity engagement. Based on these results, tailored interventions were designed.
Impact on practice or Results: Core themes from qualitative data were feasibility, acceptability, and delivery preferences. Male AYAs in both the UK and Canada endorsed a man-made approach to survivorship care. In Canada, male AYAs (n = 10) participated in a 5-week intervention that utilized sport as a way to engage men, provide psychoeducation on health and wellbeing, and fostered peer-support. The intervention was well received, with the majority of participants rated being ‘very satisfied’. However, satisfaction with the psychoeducation component was mixed; 45% very satisfied or satisfied, and 55% neither ‘satisfied nor dissatisfied’.
Discussion or Conclusions: Tailoring survivorship care to men may address lack of engagement and enhance acceptability. Results from these studies support continued development and testing of gender-sensitized approaches to AYA survivorship care.
S13 Biobehavioral trajectories during and after cancer treatment: return to work and personal growth as exemplars
School of Social Work, University of Haifa, Haifa, Israel
This symposium will start with an overview of biobehavioral trajectories of survival and well-being. It will then focus on new research findings related to two exemplars of the challenging characteristics of well-being among cancer survivors: return to work and personal growth:
Barbara Andersen will provide a review of biobehavioral trajectories from diagnosis forward. Longitudinal data on individual differences in psychological, behavioral, and biologic markers will be presented.
Elizabeth Andritsch will discuss current literature on personal growth with a focus on the role of work in personal growth processes and will present results of 10-year follow-up of personal growth among breast cancer survivors in relation to being engaged in voluntary work in older age. Based on in-depth interviews, Dana Yagil, Hadass Goldblatt, and Miri Cohen will present results of a study on work supervisor–cancer survivor dyads, focusing on the difficulties and challenges of return to work of the supervisor-survivor unit, the dyadic resources, and coping patterns.
Linda Sharp will focus on return to work of a rarely studied group - self-employed cancer survivors. She will present data from cross-sectional datasets in seven European countries, and from a prospective cohort study comparing work-related and health-related outcomes between self-employed and salaried survivors. The symposium will provide participants with an overview of the newest research on challenges of survivorship, increasing awareness regarding specific groups of survivors that need special attention from practitioners, service-providers, and decision-makers, highlighting gaps in knowledge and suggesting new directions for the timing and substance of survivorship care.
S13-573 Relationship between Coping and Personal Growth in the Context of Work in Cancer Survivors
Elisabeth Andritsch, Clemens Farkas, Silke ZLoklikovits
Division of Clinical Oncology, Medical University of Graz, Graz, Austria
Background/rationale or Objectives/purpose: Personal growth in cancer survivors resulting from their experience of a life threatening disease is frequently reported in a line of a few studies. Criteria of posttraumatic stress disorder are less connected with personal growth in cancer patients but there are some other psycho-social aspects such as the work situation which may influence significantly personal growth (PG). PG are described as model of a cognitive process which lead to positive interpretations of a challenging event and to find meaning, which are seen as significant coping styles in cancer survivors.
Methodology or Methods: Current literature with special focus on the role of work in the context of PG will be discussed. A follow up study, ten years after the diagnosis of breast cancer in a sample of 40 breast cancer survivors in the middle age of 69 years will demonstrate the association between different coping strategies (e.g. avoidance, intrusion, fighting spirit), the fear of cancer recurrence, as well as the role of work with PG.
Impact on practice or Results: Significant improvements in most of the coping strategies and mainly in fear of progression from 1 year after the diagnosis to the 10 years follow up could be seen. Fighting spirit, anxious preoccupation as well as hope- and helplessness are associated with most domains of the PG Scale. Emotional quality of life and being engaged in voluntary work was also significantly related to PG.
Discussion or Conclusions: The concept of PG including the role of work should be considered in psychosocial interventions, promoting PG as positive outcome in cancer survivors‘ life experience.
S13-407 Work participation after cancer among the self-employed: are we closing the knowledge gap?
Newcastle University, Newcastle upon Tyne, United Kingdom
Background/rationale or Objectives/purpose: In many countries, the proportion of people in the workforce who are self-employed is growing. In Europe, for example, the self-employed comprise, on average, 15% of the workforce. Despite the growing importance of the self-employed as a group, there is limited research investigating the impact of cancer on self-employed people. This presentation reports primary research on this topic.
Methodology or Methods: We brought together 11 datasets from cross-sectional surveys among cancer survivors in seven European countries to compare work-related outcomes between self-employed and salaried survivors. We also conducted a longitudinal study of self-employed and salaried cancer survivors in Ireland who were working at diagnosis and examined work participation, and health-related quality-of-life, at 6 and 12 months post-diagnosis.
Impact on practice or Results: Fewer self-employed cancer survivors take time off work due to cancer than salaried survivors. More self-employed than salaried survivors return to work after cancer. Self- employed survivors make larger reductions in working hours post-diagnosis but still work more hours per week post-diagnosis than salaried survivors. Self-employed survivors receive less financial compensation when absent from work post-cancer. In some settings, self-employed survivors have worse health and quality-of-life outcomes than salaried survivors.
Discussion or Conclusions: The evidence suggests self-employed people consider the needs of their business as well as their health needs after a cancer diagnosis. This may make them vulnerable to poorer health outcomes. Health professionals should be alert to the challenges this group may experience. Interventions are needed that help self-employed survivors balance post-cancer recovery with securing their business.
S13-590 Dyadic Resources in the Return to work of Cancer Survivors: The Perspective of Employees and Supervisors
Dana Yagil, Hadass Goldblatt, Miri Cohen
University of Haifa, Haifa, Israel
Background/rationale or Objectives/purpose: Objectives/purpose. The number of working-age people recovering from cancer is gradually on the rise. Yet, cancer survivors have higher rates of unemployment compared to other employees. Cancer survivors returning to work cope with symptoms of fatigue, distress, cognitive difficulties, and physical limitations. in this study, we addressed the supervisor–cancer survivor dyad as the unit of analysis, aiming to identify the dyadic resources that underlie the coping of the supervisor–employee unit with return to work.
Methodology or Methods: Methods. The sample included 12 dyads of cancer survivors and their supervisors, representing successful return to work. In-depth semi-structured interviews were conducted and analyzed using thematic analysis approach.
Impact on practice or Results: Results. Four themes were revealed: (1) Congruent supervisor–cancer survivor views regarding personalized/standard management of cancer survivors’ return to work; (2) Return to work as a team-work approach; (3) Commitment and persistence in the face of obstacles, and (4) Supervisor and cancer survivor mutual appreciation.
Discussion or Conclusions: Conclusion and clinical implications. The results suggest that joint coping of supervisors and cancer survivors with the difficulties of the return to work process can contribute significantly to the success of return to work.
S13-671 Trajectories of recovery and decline in cancer patients: Understanding biobehavioral and host factors
Barbara L. Andersen
Department of Psychology, Ohio State University, Columbus, USA
Background/rationale or Objectives/purpose: Objectives. Five-year disease endpoint trajectories are available for every cancer site. In contrast, there are few longitudinal, biobehavioral studies of survivors extending beyond the first- or second-year following diagnosis. As the number of cancer survivors continues to climb, the need to understand the trajectory of recovery and/or decline of psychological and behavioral responses is clear. Empirically, the phases of change and when are the most critical points of change are largely unknown. Understanding the trajectory of host factors, such as immunity, is also needed due to their importance in destruction of malignant cells and surveillance against re-emergence of tumors.
Methodology or Methods: Methods. Data are longitudinal (from diagnosis) and biobehavioral, studying patients disease free (breast, N = 113; 5yrs) and those with disease refractory to treatment (chronic lymphocytic leukemia, N = 251; 2yrs.) or rapidly progressing (lung, N = 156; 1yr.).
Impact on practice or Results: Results. For each group, multiphase linear mixed models will show phases, specific timepoints of change, and individual differences in psychological (stress, depressive symptoms), behavioral (employment), and biologic (immune/disease) markers.
Discussion or Conclusions: Conclusions. Group commonalities/differences will be discussed. This empirical detail suggests new directions for the timing and substance of survivorship care aimed at improving biobehavioral trajectories from diagnosis and thereafter.
S14 CAPO/CANO Joint Symposium: Understanding and Responding to the Needs of Adolescent and Young Adults (AYA) with cancer in Canada
Alberta Health Services, Calgary, Canada
In Canada every year approximately 2,000 adolescent and young adults (AYA) hear the words “you have cancer”. Distress and anxiety are often amplified in this population as their cancer and its treatment causes disruptions in school and employment, a reliance on parents when they are striving to become independent. Intense symptom burden coupled with a very real threat of mortality and significant late and long term effects add to the complexity for this population. With a relatively high survival rate there is a growing population of AYA-aged survivors who require tailored support to meet their unique age-related, clinical, physical, psychosocial and practical needs and a growing recognition that a unique AYA model of interdisciplinary care may be required to optimize outcomes for this population.
This symposium will start with an overview of the findings from a recent Pan-Canadian survey that was designed to examine the needs (physical, emotional, practical, and informational) of AYA cancer survivors 1-3 years after treatment. The findings of the survey point to fatigue and tiredness, anxiety and worry about cancer returning, changes in sexual intimacy, and returning to work or school as the biggest concerns faced by AYA. The two remaining presentations in this symposium will then focus on innovative AYA interdisciplinary models of care, highlighting the impact they are having on meeting unique AYA needs. The symposium will conclude with a short debrief from a discussant and an interactive audience/panel discussion.
S14-294 Experiences of Cancer Patients in Transition Study: The largest pan-Canadian survey examining the unmet needs of AYA cancer survivors
Canadian Partnership Against Cancer, Toronto, Canada
Background/rationale or Objectives/purpose: Survivorship is a well-recognized but poorly understood gap in cancer control, due to the lack of availability of consistent and reliable data on what individual experience in the post-treatment period. To better understand the challenges related to cancer survivorship, the Canadian Partnership Against Cancer conducted the largest pan-Canadian survey, the Experiences of Cancer Patients in Transition Study, in collaboration with 10 provincial cancer agencies across Canada.
Methodology or Methods: The survey was designed to examine: the needs (physical, emotional, practical, and informational) of adult and AYA cancer survivors 1–3 years after treatment, patient characteristics associated with unmet needs, and system enablers/predictors correlated with needs being met. The survey was comprised of 83 closed and open-ended questions.
Impact on practice or Results: The study had an overall response rate of 33.3%, with 575 surveys completed by AYA (18–34 years) from across the provinces. Results indicate many AYA have concerns about physical, emotional and practical issues following completion of treatment but are not receiving help to reduce their suffering. Some of the biggest concerns faced by AYA were fatigue and tiredness, anxiety and worry about cancer returning, changes in sexual intimacy, and returning to work or school. Many did not seek help for their concerns because they didn’t think anything could be done or thought it was normal.
Discussion or Conclusions: This study is the first step in understanding the challenges faced by AYA who transitions out of the cancer system and back into the community and broader health system without having access to all the supports they need.
S14-337 The Oncology and Sexuality, Intimacy and Survivorship (OASIS) Clinic: Highlighting the Synergy Between Psychological and Nursing Care when Caring for AYAs with Sexual Health Concerns
Reanne Booker1, Lauren Walker2,1, John Robinson3,1
1Tom Baker Cancer Centre, Calgary, Canada;2University of Calgary, Calgary, Canada;3University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: Background: Cancer care is most effective when provided by coordinated multidisciplinary teams and sexual health care of oncology patients is no exception. Psychological assessment and physiological assessment are essential components of sexual health treatment. Integrated multi-disciplinary care achieves more efficient and effective treatment delivery by avoiding multiple referrals to a series of different providers.
Methodology or Methods: Methodology: We designed an innovative, multi-disciplinary sexual health clinic where patients’ sexual health concerns are addressed from a biospsychosocial perspective. Patients seen in the clinic are assessed by a registered nurse, who also assists in triaging new referrals, and then they are seen by both a psychologist and a nurse practitioner. All clinic health care providers have specialized training in sexual health and oncology. Referrals to the clinic have been for an array of different sexual health concerns including diminished desire, difficulties with erections, vulvovaginal changes, and relationship problems, to name a few. Young adults with cancer represent a large number of referrals to the clinic. Treatment plans are designed for the patient by the team and integrate both psychosocial and physiological interventions.
Impact on practice or Results: Impact on practice: qualitative data from patients and clinicians have unequivocally and consistently revealed that the clinic is meeting a previously unmet need and is resulting in improved sexual health and quality of life for patients.
Discussion or Conclusions: Discussion: We will share two case studies that illustrate the importance of and synergy between nursing and psychological care when addressing patients’ sexual health concerns after a cancer diagnosis.
S14-335 Adolescent/Young Adult (AYA) Oncology Clinic: Value Added Services to Support Softer Landings for AYAs with Cancer
Sarah McKillop1, Jodie Jespersen2
1Cross Cancer Institute, Edmonton, Canada;2Cross Cancer Institute, Edmonton, Canada
Background/rationale or Objectives/purpose: AYAs (15–39 years) with cancer face distinct challenges for which specialized and tailored cancer services are needed. To better support the distinct medical, psychosocial and developmental challenges of this population receiving care in the adult cancer care system, an AYA oncology clinic was established at the Cross Cancer Institute in Edmonton, Alberta.
Methodology or Methods: The goal of the AYA oncology clinic is to provide AYA tailored care in 3 key areas. 1) Survivorship: education, surveillance and early detection of long term and late effects of cancer treatment; 2) Consultation for AYA unique issues; 3) Support for transition from pediatric to adult cancer services at time of relapse. A referral pathway was developed and the clinic launched in 2014.
Impact on practice or Results: A review of patients seen in the AYA oncology clinic demonstrates the success of this adjunct clinic for tailored AYA care. AYAs demonstrate a willingness to engage in risk-based surveillance and/or support for AYA unique issues as evidenced by the high percentage of patient follow-up through the clinic. More than half of AYAs presenting for survivorship have been identified with having a previously undiagnosed long term effect of cancer or treatment with appropriate referrals to specialized care initiated by the clinic.
Discussion or Conclusions: The AYA oncology clinic is an effective venue to provide essential and unique value added cancer care services tailored to AYAs’ unique needs.
S15 Distress in Adolescent and Young Adult Cancer Patients: Approaches to improving measurement, and understanding of incidence and distress predictors
University of Sydney, Sydney, Australia
Adolescents and young adults diagnosed with cancer (AYAs) experience a complex interplay of psychosocial challenges. They must navigate a range of key developmental milestones and manage their diagnosis, treatment and side effects, often whilst bridging the paediatric and adult health systems. Unsurprisingly, they have been identified as a cohort with specific needs who are at increased risk of mental health concerns. With distress now established as the sixth vital sign in cancer care, there is a need for appropriate tools to screen for distress in AYAs. Recently, the NCCN Distress Thermometer (DT) and Problem Checklist (PCL) were adapted for use with AYAs. In this symposium the work of an international collaboration (Australia, UK, US, Canada) to validate the DT amongst AYAs is reported. This includes the establishment of an appropriate clinical cut-off score on the DT, as well as reporting on the prevalence of distress and needs in AYAs. Collaboration members have extended the project in their respective countries and two of these studies are also reported. The first involves a re-examination of the PCL in Canada to develop an outcome measure enabling in-depth exploration of the items of the PCL, including predictors of various sub-components of distress. The final presentation reports on distress and PCL findings with Australian AYAs and considers the predictive capacity of a wide range of variables such as health literacy and spirituality. This symposium brings together a wide body of work examining how to measure and understand psychosocial distress in AYAs diagnosed with cancer
S15-421 Development and Application of the Cancer Distress Scales-AYA (CDS-AYA) for use in Adolescent and Young Adults with Cancer in Canada
Norma D’Agostino1, Charlene Rae2, Elena Tsangaris3, Vicky Breakey2, Anne. F Klassen2
1Princess Margaret Cancer Center, Toronto, Canada;2McMaster University, Hamilton, Canada;3Brigham and Women's Hospital, Harvard Medical School, Boston, USA
Background/rationale or Objectives/purpose: The NCCN Distress Thermometer (DT) and Problem Checklist (PCL) were modified in Australia for distress screening in AYA with cancer. The aim of this study is to build on the work of the Australian group to develop a patient-reported outcome measure, called the Cancer Distress Scales-AYA (CDS-AYA) to enable interval-level measurement of distress.
Methodology or Methods: Rasch Measurement Theory analysis was used to identify sub-scales and to assess reliability and validity. Receiver operating characteristic (ROC) curve analysis was used to generate cut-points based on distress as defined by the Hospital Anxiety and Depression Scale (HADS). The Edmonton Symptom Assessment Scale (ESAS-r) and NCCN DT were used to assess the CDS-AYA as a performance measurement. Logistic regression was used to identify significant factors for stratification. Differences between instruments were assessed using Chi-square test.
Impact on practice or Results: 515 AYA participated in the study. Rasch Measurement Theory analysis identified 5 scales (impact of cancer, physical, emotional, cancer worry, and cognitive) with ordered thresholds, good item fit, and acceptable reliability. CDS-AYA emotional scale had the greatest area under the curve (best able to distinguish between groups) and a cut-off value of 27 was identified. Gender and treatment status were both predictors of distress. Proportion of AYA with distress varied by instrument: On-treatment: males 38.7%-62.2% and females 49.5%-71.0%; Off-treatment: males 20.7%-33.1% and females 32.6%-44.9%.
Discussion or Conclusions: The CDS-AYA can be used as an outcome measure both for research and performance measurement in AYA with cancer.
S15-423 An International Validation of the Distress Thermometer for Adolescents and Young Adults Recently Diagnosed with Cancer
Pandora Patterson1,2, Norma D’Agostino3, Fiona E.J. McDonald1,2, Terry Church4, Daniel Costa2, Anne Klassen5, James Hu4, Dan Stark6
1CanTeen, Sydney, Australia;2University of Sydney, Sydney, Australia;3Princess Margaret Cancer Center, Toronto, Canada;4University of Southern California, Los Angeles, USA;5McMaster University, Hamilton, Canada;6University of Leeds, Leeds, United Kingdom
Background/rationale or Objectives/purpose: There are no validated brief screening measures of distress for adolescents and young adults (AYAs: 15–29 years) recently diagnosed with cancer. This international study examined the validity of a single-item distress thermometer (DT) for this group combined with an AYA-modified problem check-list (PCL).
Methodology or Methods: 309 AYA cancer patients completed the DT tool and the Hospital Anxiety and Depression Scale (HADS) in Australia, Canada, England, and USA. Participants had been diagnosed in the previous three months. A Receiver Operating Characteristics (ROC) analysis was used to determine the best DT cut-off score, using the HADS as the decision variable. Prevalence of problem domains on the PCL was calculated for the combined sample.
Impact on practice or Results: The DT correlated strongly with the HADS, providing evidence of its construct validity (r = .631, p
Discussion or Conclusions: The DT is a valid distress screener for AYAs with cancer. Along with the AYA-modified PCL, it provides clinicians with a critical tool to assess the psychosocial wellbeing of these young people and allow for the provision of personalised support and care which is responsive to individuals’ specific needs and concerns.
S15-424 Prevalence and Predictors of Distress and Common Psychosocial Concerns in Adolescents and Young Adults Recently Diagnosed with Cancer in Australia
Fiona E.J. McDonald1,2, Pandora Patterson1,2, Michael Osborn3,4, Richard Tindle1, Ursula M. Sansom-Daly5,6,7, Karen Matthews8, Meg Plaster9, Roslyn Henney10, Kate Thompson11, Antoinette Anazodo5,6,7
1CanTeen, Sydney, Australia;2University of Sydney, Sydney, Australia;3Royal Adelaide Hospital, Adelaide, Australia;4Women's and Children's Hospital, Adelaide, Australia;5University of New South Wales, Sydney, Australia;6Sydney Children's Hospital, Sydney, Australia;7Prince of Wales Hospital, Sydney, Australia;8Calvary Mater Newcastle, Newcastle, Australia;9Sir Charles Gairdner Hospital, Perth, Australia;10Queensland Children's Hospital, Brisbane, Australia;11Peter MacCallum Cancer Centre, Melbourne, Australia
Background/rationale or Objectives/purpose: Adolescents and young adults with cancer (AYAs) have complex psychosocial needs. We used the AYA-modified Distress Thermometer (DT) and Problem Checklist (PCL) to examine the prevalence and predictors of distress in recently diagnosed AYAs and their most common psychosocial concerns.
Methodology or Methods: 110 AYAs from 18 Australian hospitals completed the DT/PCL and questionnaires assessing demographics, perceived illness severity, health literacy, family functioning, and spirituality. Multivariate linear regression was used to identify predictors of DT scores.
Impact on practice or Results: Participants were 15–25 years (M = 20.7, SD = 3.1), 52% male, and diagnosed with an oncological (45%) or haematological (55%) malignancy within the previous 3 months. Most saw their disease as serious (84%) and severe (56%). They reported low family expressiveness (p < .001), cohesion (p < .001), and conflict (p < .001) compared to adolescent norms. 44% scored at or above the DT clinical cut-off for distress. Common concerns on the PCL included: missing activities with friends (51%), hair loss (40%), parents (40%) and education (38%). Distress was highly correlated with PCL score (r = .504,p < .001), and higher for females (p = .039) and participants with lower functional health literacy (p = .012). Distress was lower for participants who believed ‘whatever happens, things will be OK’ (p = .037), an indication of acceptance. No other predictors were significant in the final model.
Discussion or Conclusions: Almost half of recently diagnosed AYAs in Australia have clinical levels of distress, with females, those with reduced health literacy, and those with low acceptance at increased risk. A better understanding of predictors of distress will facilitate early identification and the development of appropriate interventions.
S16 The burden and importance of sleep problems in pediatric oncology
St. Jude Children's Research Hospital, Memphis, USA
Sleep has both behavioral and biological consequences for cancer recovery; however, our understanding of the impact of sleep on the pediatric cancer trajectory is limited. As part of the Pediatric SIG of IPOS, the Sleep in Pediatric Oncology Collaborative is an international group of researchers committed to advancing sleep research and clinical practice in pediatric cancer. This symposium will present current research from members of this group with a discussion to follow regarding next steps for integrating sleep based screening and treatment into pediatric oncology. Dr. Daniel will describe the scope of the problem of sleep disturbances in pediatric cancer and the interrelationship of sleep with symptom burden, using PROMIS measures in pediatric patients in the first year after diagnosis. Next, Dr. van Litsenburg will describe the first phase of an online cognitive behavioral therapy for insomnia intervention, including prevalence rates of sleep disorders, in adolescents and young adults on treatment and in survivorship. Finally, Dr. Crabtree will present results from the first randomized controlled trial evaluating bright light therapy for fatigue management in adolescents and young adults with solid tumors. The session will conclude with a panel discussion with the presenters about how sleep can be incorporated into existing pediatric oncology research and next steps for clinical trials targeting sleep-related outcomes.
S16-355 Light Therapy to Increase Energy in Adolescents and Young Adults Newly Diagnosed with Cancer
Valerie Crabtree1, Hui Zhang1, Fang Wang1, Jane Brigden1, Erin MacArthur1, Kathryn Russell1, Matthew Wilson2, Alberto Pappo1
1St. Jude Children's Research Hospital, Memphis, USA;2University of Tennessee Health Science Center, Memphis, USA
Background/rationale or Objectives/purpose: Fatigue is one of the most consistent, distressing symptoms reported by adolescent/young adult (AYA) oncology patients. Bright white light (BWL) has been shown to combat fatigue in adult oncology, but it has not been explored in AYA oncology patients.
Methodology or Methods: Participants were randomized to receive dim red light (DRL, n = 24) or BWL (n = 27) via LiteBook® (retrofitted with adherence monitors) for 30 minutes upon awakening daily for eight weeks. Side effects were assessed weekly via modified Systematic Assessment for Treatment Emergent Effects (SAFTEE). Participants also completed the PedsQL Multidimensional Fatigue Scale.
Impact on practice or Results: 73% of those approached consented and participated; mean adherence was 57% of days on study (CI 47.57–62.1%). BWL demonstrated no significantly greater number of extreme treatment-emergent effects than DRL. BWL group demonstrated significant improvement in self-reported cognitive fatigue (β = 1.0041, p = 0.0076), and in parent-reported general fatigue (β = 2.6018, p < .0001), cognitive fatigue (β = 1.1437, p = 0.0253), and total fatigue (β = 1.9529, p = < .0001), while results for DRL group are not statistically significant.
Discussion or Conclusions: This is the first study to evaluate feasibility and acceptability of light therapy to reduce fatigue in AYA oncology patients, and both were supported. Improvement in fatigue seen in the BWL group demonstrates preliminary evidence of effectiveness of this intervention. Given the severity of fatigue experienced by AYA oncology patients and the lack of evidence-based interventions to ameliorate this symptom, our approach promises new opportunities for symptom management.
S16-368 Disentangling the diversity of sleeping problems and current treatment-seeking behavior in adolescents who had childhood cancer: preliminary results of the MICADO-1 study
Shosha Peersmann1,2, Annemieke Van Straten3, Gertjan Kaspers1,2, Martha Grootenhuis1, Raphaele Van Litsenburg1,2
1Princess Maxima Center for Pediatric Oncology, Utrecht, Netherlands;2Emma Children's Hospital, Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, Netherlands;3Vrije Universiteit, department of Clinical, Neuro, and Developmental Psychology, Faculty of Behavioural and Movement science & Amsterdam Public Health research institute, Amsterdam, Netherlands
Background/rationale or Objectives/purpose: Having sleep problems and childhood cancer poses a double health burden, since both are related to increased risks of adverse health outcomes. However, sleep problems are heterogeneous and each type of sleep disorder requires different treatment. Little is known about this diversity of sleep disorders and treatment-seeking behavior after childhood cancer. Therefore, our aim is to disentangle this diversity by studying sleep disorders in adolescents who had childhood cancer and determine their treatment-seeking behavior.
Methodology or Methods: In a cross-sectional national cohort study, adolescents (13–25 years) diagnosed with childhood cancer between 2013–2018 and ≥6 months after treatment were invited to fill out questionnaires including: self-reported treatment-seeking behavior and Holland Sleep Disorders Questionnaire, which distinguishes six sleep disorders and shows substantial agreement with the International Classification of Sleep Disorders-2 classification.
Impact on practice or Results: Thus far 201 of 500 adolescents have been invited and 58.7% (n = 118) responded. General sleep disturbance was reported in 29.7%, duration of complaints was ≥3 months in 54.3%. Criteria for a sleep disorder were met by 20% of patients, half of them met criteria for two or more disorders: insomnia (9.3%), restless-legs-syndrome/limb-movements-of-sleep (8.5%), circadian-rhythm-sleep-disorder (7.6%), parasomnia (5.1%), hypersomnia (3.4%), sleep-related breathing disorder (2.5%). Of all adolescents, 14.4% had previously sought sleep treatment and of those with general sleep disturbance only 25.7% did so.
Discussion or Conclusions: One third of adolescents after childhood cancer treatment report a diverse array of sleep problems, but only a minority seeks out treatment. Further research should investigate treatment needs and barriers to enable tailoring of sleep treatments within pediatric oncology.
S16-394 Sleep and symptom burden in pediatric oncology in the first year after diagnosis
Lauren Daniel1, Jamie Flannery1, Yael Gross2, Chris Forrest3, Lamia Barakat3
1Rutgers University, Camden, USA;2Lehigh University, Bethlehem, USA;3The Children's Hospital of Philadelphia, Philadelphia, USA
Background/rationale or Objectives/purpose: To test the relationship between sleep disturbances and sleep-related impairment with cancer-related symptom burden.
Methodology or Methods: Children in months 2–12 post diagnosis (n = 34; ages 8–17) and caregiver proxies (n = 79; of children ages 5–17), currently on treatment completed the Pediatric Quality of life Cancer Module (nausea and treatment anxiety subscales) and pediatric PROMIS scales measuring sleep, fatigue, and pain interference.
Impact on practice or Results: 44% of patients and 58% of caregivers rate sleep disturbances >75th percentile and 47% of patients and 54% of caregivers rate sleep related impairment >75th percentile. Sleep disturbances and sleep-related impairment are moderately related to nausea (Disturbances: caregiver r = -0.46, p < .001; patient r = -0.44, p = .010; Impairment: caregiver r = -0.47, p < .001; patient r = -0.33, p = .055), fatigue (Disturbances: caregiver r = 0.50, p < .001; patient r = 0.61, p < .001; Impairment: caregiver r = 0.71, p < .001; patient r = 0.69, p < .001), and pain interference (Disturbances: caregiver r = 0.29, p = .008; patient r = 0.54, p = .001; Impairment: caregiver r = 0.36, p = .001; patient r = 0.56, p < .001) by caregiver and patient report. Sleep was not related to treatment-related anxiety (Disturbances: caregiver r = -0.13, p = .244; patient r = -0.06, p = .732; Impairment: caregiver r = 0.16, p = .151; patient r = -0.11, p = .543). Sleep disturbances predicted 18% of the variability [F(1,78) = 17.08, p < .001] in caregiver-report and 23% [F(1,33) = 9.63, p = .004] in patient-report of symptom burden. Sleep-related impairment predicted 34% of the variability [F(1,78) = 40.34, p < .001] in caregiver-report and 32% [F(1,32) = 15.09, p < .001] in patient-report of symptom burden.
Discussion or Conclusions: Sleep disturbances are commonly occurring in pediatric oncology and closely related to cancer symptoms. Consistent assessment and treatment of sleep problems during cancer treatment may reduce symptom burden and improve coping.
S17 Implementing a nationwide cancer psychosocial service: core ingredients for success
Northern Regional Alliance, AUCKLAND, New Zealand
The Cancer Psychological and Social Support Initiative is a centrally funded Initiative to improve support for people with cancer in New Zealand. Introduced in 2015, the Initiative provides funding for District Health Boards (DHBs) to appoint psychologists and social workers to improve the experience for people with cancer and to improve access and the timeliness of access to psychosocial support services. Focussing on people with high and complex psychosocial needs and ensuring equity of access by engaging with people who otherwise may ‘miss out’, the Initiative aims to be nationally consistent but with appropriate variation to suit local needs. Three years into the development and implementation, and the completion of an external evaluation, a number of successes, challenges and lessons have emerged.
The symposium will describe the New Zealand experience of implementing a nationwide psychosocial initiative by exploring four important themes: 1. Successes and challenges of implementing a nationwide initiative, 2. Improving timeliness and equity, 3. Integration of psychosocial services into usual medical care, 4. Developing consistency while being responsive to regional and professional differences.
This symposium is relevant to a wide audience but in particular to inform those looking to develop and implement new psychosocial cancer services especially at a regional or national level.
S17-205 Success and challenges of implementing a nationwide cancer psychosocial initiative
Northern Regional Alliance, Auckland, New Zealand; University of Auckland, Auckland, New Zealand
Background/rationale or Objectives/purpose: The Cancer Psychological and Social Support Initiative is a centrally funded Initiative to improve support for people with cancer in New Zealand. Introduced in 2015, the Initiative provides funding for the 20 District Health Boards (DHBs) to appoint social workers and psychologists to develop and implement cancer psycho-social services. The initiative specifically targets patients with a diagnosis or a high suspicion of cancer, at the front of the treatment pathway. Focusing on people with high and complex psycho-social needs, the Initiative aims to address the needs of ‘hard to reach’ groups and communities including rural, socioeconomically disadvantaged, and Maori and Pacific communities who have well documented cancer inequities.
Methodology or Methods: This presentation will focus on the development and implementation of the Initiative across New Zealand including the experience of clinicians, key stakeholders and patients. Key successes, challenges and barriers will be discussed informed by the results of an independent external evaluation.
Impact on practice or Results: The experience of developing and implementing a new nationwide cancer psycho-social service has importance for those looking to develop new services, but also for psycho-social services wanting to focus specifically on ‘hard to reach groups’.
Discussion or Conclusions: Overall this initiative has been successfully implemented across New Zealand. Patients, staff and key stakeholders report that it is a vital service making a significant difference to people with cancer. Opportunities for improvement and future development will be discussed.
S17-207 A National Initiative: Standardization and flexibility, getting the balance right
Don Baken1, Jenny Allison2
1Massey University, Palmerston North, New Zealand;2Auckland District Health Board, Auckland, New Zealand
Background/rationale or Objectives/purpose: The roll out of a national initiative provides a number of challenges and opportunities. Both standardization and flexibility have been integral to the success of the initiative. While many aspects of service have been standard, flexibility has been required to ensure local delivery is responsive to the needs of the local area and to improve equity.
Methodology or Methods: The New Zealand Cancer Psychological and Social Support Initiative was implemented in 2015. Services across New Zealand have had to maintain consistencies such as referral criteria, the use of an outcome measure and data collection. However they have also responded with flexibility when working with existing psychosocial services and how services have adapted to differing geography. Furthermore, services have responded to the differences required to meet the needs of New Zealand's Maori, Pacific and rural communities, groups which are shown to have poor cancer outcomes in New Zealand.
Impact on practice or Results: This presentation will focus on examples from different parts of New Zealand to show how this balance was negotiated across a number of service aspects in different regions. It will show that the balance between standardization and flexibility is integral to running services and improving psychosocial outcomes and equity for cancer patients in New Zealand.
Discussion or Conclusions: The Cancer Psychological and Social Support Initiative will continue with an approach of standardization and flexibility in order to maintain positive outcomes for patients.
S17-212 Improving equity in access to timely cancer treatment: A follow-up audit demonstrating how a New Zealand District Health Board successfully addressed disparities in starting treatment
Marie Young1, Lisa Reynolds1,2, Amy Hemmington1, Rob McNeill2
1Counties Manukau Health, Auckland, New Zealand;2The University of Auckland, Auckland, New Zealand
Background/rationale or Objectives/purpose: A previous audit by the current investigators in for the 12 month period to 31/01/2016 explored demographic and tumour stream differences between patients that met the 62-day Faster Cancer Treatment (FCT) target set by the New Zealand Ministry of Health and those that did not meet the target. Significant differences were found for ethnicity and deprivation index along with tumour stream. The current audit aimed to understand whether service improvement initiatives since the last audit have resulted in less disparity between patients that do and do not meet the 62-day FCT target for the 12 months to 31/10/2017.
Methodology or Methods: Patients were identified through the Cancer Tracking Database. Those who met the FCT 62-day target were compared with those that did not meet the target on variables of age, gender, ethnicity, deprivation index and tumour stream.
Impact on practice or Results: Results found no difference across age, gender, deprivation index, or ethnicity between those that met the 62 day FCT target and those that did not for the 12 month period up to 31 October 2017. A number of tumour streams remain more likely to have patients not meet the target.
Discussion or Conclusions: The more recent audit suggests service improvement initiatives have addressed inequity across ethnicities and for people living in greater deprivation. The findings demonstrate the impact of multiple approaches in making a real difference to disparities in accessing cancer treatment and provides valuable evidence to those on the ground that their efforts have a real effect on outcomes.
S17-379 Integration of psychosocial services into routine medical care: the New Zealand experience
Amy Hemmington1, Pip Smith2
1Counties Manukau Health, Auckland, New Zealand;2Waikato District Health Board, Hamilton, New Zealand
Background/rationale or Objectives/purpose: Setting up a psychosocial service within a medical stronghold has its challenges. While there was significant support for this from individual clinicians and managers substantial background work in terms of planning, implementing and promoting the initiative has also taken place. This presentation focusses on the experiences of the Cancer Support: Psychology and Social Work service at Middlemore Hospital and the Cancer Psychological and Social Support Services at Waikato Hospital. This talk will discuss the various strategies employed to enhance the integration of psychosocial care into routine cancer services.
Methodology or Methods: A range of different methods were used to facilitate integration. Discussion will focus on highlighting successful examples of networking and collaboration, practical elements that have facilitated use of the service, processes that have enhanced referrals rates and providing data to management and medical staff on patient satisfaction and pre- and post-intervention distress screen scores.
Impact on practice or Results: The impact of this will be discussed in terms of the successes and difficulties with implementation and effects on referral numbers.
Discussion or Conclusions: Integration into existing cancer services within the respective District Health Boards has been a vital component of implementing this psychosocial initiative. It has helped to raise awareness of the service and psychosocial issues, ultimately improving the wellbeing of the patients who have been referred. Maintaining and furthering integration of the individual psychosocial services will continue to be a primary focus moving forward.
S18 Increasing the accessibility and quality of psychosocial cancer care: challenges and successes in development, codesign and evaluation of eHealth tools
University of Newcastle, Callaghan, Australia
According to patient-centred principles, high-quality psychosocial cancer care should be easily accessible, tailored to patients’ unique preferences and emotional needs, and provide adequate information for patients and their loved ones. eHealth tools can enhance these components of patient-centred psychosocial care. To design robust eHealth tools, the developed content must be evidence-informed and engaging for patients and health professionals. The format and content must also not exacerbate disparities attributed to health literacy and language barriers.
This symposium offers three real-world examples of eHealth tools designed to supplement psychosocial care. We selected studies to represent different eHealth tools (smartphone app, telephone-based, and online chat) at varying stages of integration into routine cancer care in order to appeal to an international audience.
The first presentation will describe a regional smartphone app designed to enhance information provision (CANcierge); the presentation will review successful strategies used to engage cancer patients, including Indigenous groups, in the development process. The second presentation will describe a national telephone-based program (START) to identify and triage over 1000 distressed cancer patients and caregivers. This presentation will highlight methods used to adapt processes trialled in face-to-face clinical settings into a pragmatic model for nurse-led telephone services. The third presentation will highlight the acceptability, uptake and outcomes of a state-based telephone and online counselling model (OPAL) for lung cancer patients. The symposium will conclude with a discussion on the common challenges experienced when designing eHealth tools and highlight co-design strategies used to engage patients and health professionals throughout the research process.
S18-287 CANcierge: a smartphone application for patients to navigate cancer services, improve treatment experiences and enhance capacity for self-care
Catherine Johnson1, Gillian Blanchard1,2, Yolande Cox1, Craig Gedye1,2
1Calvary Mater Newcastle, Newcastle, Australia;2University Of Newcastle, Newcastle, Australia
Background/rationale or Objectives/purpose: Technology in health care has been evolving beyond those used for direct clinical care; simultaneously cancer diagnosis and treatment is increasingly complex and health literacy remains poor. These and other factors such as geographical and social isolation contribute to patients with cancer reporting information as an unmet need. To address this need we developed a software application (App).
Methodology or Methods: Engagement with patients and carers was key in the development phase. Ethics approval was obtained. Surveys and focus groups explored information needs, experiences with smart device/s and healthcare App usage. The App interface was also presented to the local indigenous community for comment on content and cultural sensitivity.
Impact on practice or Results: More than 340 users have downloaded the App in a little over 1 month. The App is used to supplement the existing services. Users of the App have easy access to relevant and reliable information, tools and resources. Staff are guiding patients to integrate the use of the app into their care to improve their treatment experience and potentially reduce distress.
Discussion or Conclusions: Patients and carers prioritised content with an emphasis on coping resources, information on general services and internal/ external programs. Engaging with patients and carers allowed the developers to include relevant and reliable information within the content of the application.
The ongoing review of analytics will assist with future iterations of the App. Active engagement with new and existing patients, families and carers about the App will be ongoing and education of staff and volunteers is required to integrate the App into routine care.
S18-289 Online and Phone Assistance for Lung Cancer Patients (OPAL): Uptake and responses to telephone versus online options in a randomised controlled trial
Christine Paul, Martine Cox, Shiho Rose, Allison Boyes, Amanda Baker, Tara Clinton-McHarg, Frans Henskens, Elizabeth Fradgley
University of Newcastle, Callaghan, Australia
Background/rationale or Objectives/purpose: Lung cancer patients often experience more severe physical effects and more pronounced psychosocial distress than patients with other major cancers. A key open source of personalised support for cancer patients is the Cancer Council 13 11 20 Cancer Information and Support Service. However, lung cancer patients are under-represented among service users and less than one-third report being aware of such services.
Methodology or Methods: The OPAL trial aimed to compare the relative effectiveness of: i) a printed information booklet; ii) telephone-delivered support and information; and iii) online-delivered (email and live chat) support and information; all via the Cancer Councils’ 13 11 20 Cancer Information and Support Service. Lung cancer patients were recruited from 39 Australian hospitals and individually randomised to a study arm. Participants completed postal surveys to assess engagement with the telephone and online interventions and 3- and 6-month wellbeing.
Impact on practice or Results: Of the 600 eligible patients approached to participate, 325 (54%) agreed to participate in the study. Intervention uptake rates in the telephone arm were moderate. Intervention uptake rates in the online arm were poor. Development of the approach to the online delivery of emotional support will be presented, along with experiences in implementing the online versus telephone approaches.
Discussion or Conclusions: The implementation of online assistance in the context of a telephone-based support service raises some practical and conceptual challenges. The consumer acceptability of online approaches to the provision of emotional support is also of concern.
S18-301 The START Trial – an evidence-informed distress screening and management program for patients and caregivers accessing the Cancer Council 13 11 20 telephone services
Elizabeth Fradgley1,2, Katherine Lane3, Charlotte Poxleitner4, Paula Bridge1, Monica Conway3, Annie Miller4, Della Roach1, Jo Taylor1, Chris Paul1,2
1University of Newcastle, Faculty of Health and Medicine, Callaghan, Australia;2University of Newcastle, Priority Research Centre for Cancer Research Innovation and Translation, Callaghan, Australia;3Cancer Council Victoria, Melbourne, Australia;4Cancer Council New South Wales, Sydney, Australia
Background/rationale or Objectives/purpose: In 2017, the Cancer Council 13 11 20 Information and Support service (CIS) provided informational, practical and emotional support to over 46,000 callers. In recognition of Distress as the 6th Vital Sign, the New South Wales and Victorian CIS initiated a stepped wedge trial of distress screening and management (START trial). As clinical guidelines exist for hospital-based services, the START trial is amongst the first to adapt existing distress management models specifically for telephone delivery.
Methodology or Methods: Cancer Council consultants administer the Distress Thermometer in all calls following national standards. The Patient Health Questionnaire (PHQ-4) was selected as a second-stage assessment tool based on psychometric properties; conversational tone; brevity; and, applicability to patients and caregivers. The START team held a two-day stakeholder workshop to co-design a stepped-care referral model. The development process included group review of international guidelines; identification of service characteristics to guide mapping decisions; place-card methodology to arrange services by distress severity; and, application of CIS vignettes with think-aloud methodology to confirm appropriateness of referrals. The referral model was further refined following a pilot-test with approximately 40 distressed callers.
Impact on practice or Results: To date, CIS consultants have used the START model in 435 calls. The model has underwent four revisions based on consultant feedback.
Discussion or Conclusions: Cancer Council stakeholders led the model development and co-design principles were tantamount to the successful integration of the new telephone model. Ongoing training using actual CIS cases, group debriefing, and frequent data provision was essential to identifying and overcoming barriers specific to telephone delivery.
S19 Psychosocial Care of Latino Cancer Patients
Memorial Sloan Kettering Cancer Center, New York, USA
Abstract: Latinos are at risk for poorer psychosocial well-being; and little is known about delivery of psychosocial and psycho-oncology services for Latinos. Examining disparities in access and receipt of psychosocial services among Latino patients, unique needs among patients and professionals is critical to improving care among Latino cancer patients. In this symposium, three speakers will present data and a systematic review examining unique needs and potential interventions effective among Latino patients. Talks will present quantitative and qualitative data and a systematic review. The first speaker will present a mixed methods study with mental health providers of Latino cancer patients documenting the challenging aspects of counseling them on key phases of their trajectory. The second speaker will present data about barriers to care and emotional distress among Puerto Rican cancer patients, after being exposed to the environmental disaster, Hurricaine Maria, and compared to controls. Finally, the third speaker will present results about a systematic review of psychotherapy interventions for patients with advanced cancer documenting disparities among Latinos with advanced cancer. The discussant will consider the implications of these findings for clinical practice and research priorities, highlighting the unique needs and potential interventions needed for Latino cancer patients to improve their care.
S19-713 “Maintaining Hope”: Challenges in Counseling Latino Patients with Advanced Cancer, a US and Latin American Perspective
Rosario Costas-Muniz1, Normarie Torres-Blasco2, Eida Castro-Figueroa2, Francesca Gany1
1Memorial Sloan Kettering Cancer Center, New York, USA;2Ponce Health Sciences University, Ponce, Puerto Rico
Background/rationale or Objectives/purpose: Latino cancer patients (LCP) are at risk of poor psychological adjustment. Therapeutic effectiveness in treating Latino cancer patients with advanced cancer requires managing distress, therapeutic skill and cultural competency. This mixed methods study explored mental health provider's perceptions about the challenging aspects of counseling and caring for Latino patients with advanced cancer.
Methodology or Methods: Mental Health Providers (MHP) providing mental health services to LCP in the US and Latin America completed a survey with open-ended questions about difficult aspects of counseling LCP when discussing the cancer diagnosis (CD), prognosis (CP), and death and dying (DD) issues. Sixty-six MHP providing mental health services in Spanish participated. Four independent coders coded responses and inductive content analysis was utilized to analyze the data.
Impact on practice or Results: Nine percent of MHP reported that they find challenging having discussions about the CD, 20% about CP, and 26% about DD. Thematic categories across the three areas (CD, CP, and DD) were: 1) emotional impact and coping (maintaining hope, and denial), 2) cultural issues, and 3) patient-provider related themes. Relevant themes in conversations about CP and DD were the lack of information, cancer-related education, and/or communication about cancer.
Discussion or Conclusions: Mental Health Providers describe encountering many challenges in their therapeutic discussions with Latino Cancer Patients. It is imperative to understand the factors associated to the perceived difficulty of these conversations as well as the characteristics of these conversations to develop culturally sensitive interventions and programs for patients and training interventions for providers.
S19-718 Barriers to Cancer Care and Emotional Distress after Hurricane María Hit Puerto Rico
Eida Castro1, Mary Rodríguez1, Zindie Rodriguez1, Nelmit Tollinchi1, Estefania Torres1, Idhaliz Flores1, Heather Jim2, Rosario Costas3, Guillermo Armaiz1
1Ponce Health Sciences University, Ponce, Puerto Rico;2Moffitt Cancer Center, Tampa, USA;3Memorial Sloan Kettering Cancer Center, New York, USA
Background/rationale or Objectives/purpose: Hurricane Maria (i.e., Maria) impaired access to medical care, contributing to another layer of stress and emotional burden. The overall goal of this study was to assess barriers to care and emotional distress among cancer patients (CP), compared to controls, after Maria hit Puerto Rico.
Methodology or Methods: This is a prospective cohort study. Patients (n = 50) and controls (n = 50) were recruited and assessed between January 2018 and August 2018 in Puerto Rico. Questionnaires included Barriers to Care (QBC), PHQ-8 and GAD-7 to explore the relationship among symptoms of depression, anxiety and access to cancer care after María.
Impact on practice or Results: The most common barriers fell into the QBC's Skills (M = 89.31 ± 14.06), Marginalization (M = 83.14 ± 21.74) and Pragmatics (M = 75.94 ± 21.62) dimensions. The control group reported slightly higher scores of depressive symptomatology (M = 5.92 ± 5.65) than CP (M = 7.18 ± 5.70). Both groups exhibited similar anxiety symptomatology (controls, M = 5.60 ± 5.11; CP, M = 5.96 ± 5.12). There are significant relationships between barriers to care and symptoms of anxiety (p < 0.05) and depression (p < 0.05).
Discussion or Conclusions: These findings demonstrate the need to create a plan for providing cancer care to patients in the aftermath of a natural disaster. Better infrastructure and planning may enable patients to continue their treatment and continue having access to care, thus reducing emotional distress.
S19-727 Systematic Review: Psychosocial intervention in Latino advanced cancer
Ponce Health Science University, Ponce, Puerto Rico
Background/rationale or Objectives/purpose: Aim: To identify how, whom, where and why the psychological intervention are provided to Latino advanced cancer patients.
Methodology or Methods: A systematic review was conducted to identify and evaluate studies of interventions for the quality of life in Latino advanced cancer patients. Search terms were generated iteratively from literature.
Data sources: MEDLINE, PubMed, EBSCOhost and google scholar databases were searched for the year 2000- 2018. Included studies were peer-reviewed. English and Spanish language report of either controlled trial or randomized controlled trial focusing therapies aimed to improve quality of life in advanced cancer. Articles were excluded if concentrated predominantly on terminal 5 months or fewer patients. Studies were graded for quality using the QualSyst quantitative checklist. Levels of evidence were ascertained by completing the National Health and Medical Research Council criteria. Results are according to AMSTAR guidelines.
Impact on practice or Results: The studies represented 21 fully include articles, in all, randomized controlled studies involving 21 trials were included. Overall interventions and outcome measures across studies were heterogeneous. Outcome measures, pertaining to the QoL dimension of emotional functioning, were most frequently measured. A total of 21 trials evaluating behavior therapy found positive effects on one or more indicators of QoL, for example, depression. Most study participants were female, Caucasian and only eight from 21 (38%) studies included Latinos.
Discussion or Conclusions: According to this systematic review, a handful of interventions have also targeted spiritual and existential issues in patients with advanced cancer, but minorities specially Latinos have been underrepresented or not represented at all in these intervention studies.
S20 Patient and Community Engagement Research: The experience of being an Indigenous intern
April Caillou, Charlene Rattlesnake, Henri Giroux, Tamara LowHorn
University of Calgary, Calgary, Canada
Background/rationale or Objectives/purpose: To understand the experiences, both successes and challenges, of being an Indigenous intern in the PaCER program. The Patient and Community Engagement Research (PaCER) program, O’Brien Institute for Public Health, University of Calgary (obrieniph.ucalgary.ca/pacer) provides training for patients to develop academic research skills through a year-long internship program to gain experience with codesigned, patient-led health research. The Population, Public and Indigenous Health Strategic Clinical Network (PPIH SCN) TM at Alberta Health Services is committed to work in partnership with Indigenous peoples, organizations and dedicated partners to close the gap in health outcomes with First Nations, Métis and Inuit peoples. To deliver on this mandate, the PPIH SCN™ provided funding for an Indigenous cohort from across Alberta to undertake PaCER training via distance learning and support from PaCER mentors.
Methodology or Methods: The story of this cohort is one of resilience while trailblazing a new path with the University of Calgary. The PaCER program evolved into a distance curriculum with the Indigenous cohort as the inaugural class. The cohort of adult learners faced technological challenges with connectivity across the province, experienced evacuations due to wildfires, and brought lived experience as Indigenous people to enrich the academic setting. The resilience and dedication of this Indigenous cohort is awe-inspiring on their journey to become PaCER graduates.
Impact on practice or Results: Twelve PaCER interns from the Indigenous cohort graduated on June 11, 2019 at the University of Calgary. Four community-based research projects were completed and interns from each project have unique experiences to share.
Discussion or Conclusions: Over the course of the PaCER program, Indigenous interns brought their unique Indigenous Worldviews and approaches to the program. To ensure inclusiveness and respect for Indigenous ways of Learning, Research and Knowledge Sharing, the PPIH SCN™ and its partners worked on a number of strategies to incorporate lessons being learned on how to ensure interns were supported in a meaning and culturally-appropriate way to ensure their success in the program. This unique project has created the foundation for a province-wide cohort of Indigenous people prepared to engage with their communities in research activities.
S20-764 Patient and Community Engagement Research: A novel approach to partnering with Indigenous community members
Dr. Melissa Potestio
Population, Public & Indigenous Health Strategic Clinical Network, Calgary, Canada
Background/rationale or Objectives/purpose: The Patient and Community Engagement Research (PaCER) program, O’Brien Institute for Public Health, University of Calgary (obrieniph.ucalgary.ca/pacer) provides training for patients to develop academic research skills through a year-long internship program to gain experience with codesigned, patient-led health research. The Population, Public and Indigenous Health Strategic Clinical Network (PPIH SCN) TM at Alberta Health Services is committed to work in partnership with Indigenous peoples, organizations and dedicated partners to close the gap in health outcomes with First Nations, Métis and Inuit peoples. To deliver on this mandate, the PPIH SCN™ provided funding for an Indigenous cohort from across Alberta to undertake PaCER training via distance learning and support from PaCER mentors.
Methodology or Methods: The Indigenous cohort of PaCER Internships aimed to enhance the approach of multijurisdictional partners by building the research capacity of Indigenous community members to help inform culturally appropriate and responsive approaches to cancer prevention and screening for Indigenous Albertans.
Impact on practice or Results: The expected outcomes of this project were: 1) 20 or more Indigenous PaCERs trained across Alberta, 2) Indigenous community members have increased capacity to express and utilize Western research approaches to design improvements across the health system, 3) Indigenous PaCER Interns complete a community based research project in their community and share results with their communities and other stakeholders, and 4) the PaCER Program is enhanced for future implementation with Indigenous cohorts.
Discussion or Conclusions: Over the course of the PaCER program, Indigenous interns brought their unique Indigenous Worldviews and approaches to the program. To ensure inclusiveness and respect for Indigenous ways of Learning, Research and Knowledge Sharing, the PPIH SCN™ and its partners worked on a number of strategies to incorporate lessons being learned on how to ensure interns were supported in a meaning and culturally-appropriate way to ensure their success in the program. This unique project has created the foundation for a province-wide cohort of Indigenous people prepared to engage with their communities in research activities.
S20-765 The YACPRIME Experience: Creating and sustaining an effective collaborative patient-oriented research partnership
Geoff Eaton1, Karine Chalifour2, Sheila Garland3
1Young Adult Cancer Canada, St. John's, Canada;2Department of Psychology, Faculty of Science, Memorial University, St. John's, Canada;3Discipline of Oncology, Faculty of Medicine, Memorial University, St. John's, Canada
Background/rationale or Objectives/purpose: Patient and stakeholder engagement is a process that is built on trust, mutual respect, and willingness to collaborate. It does not start nor end with a specific research protocol.
Methodology or Methods: This session will describe the process used to develop a research partnership with Young Adult Cancer Canada to conduct the “Young Adults with Cancer in their Prime (YACPRIME) study”, a project funded by the Newfoundland and Labrador Support Unit for Patient and People Oriented Research and Trials (NL SUPPORT) and the Collaborative Applied Research in Economic Fund (CARE) from Memorial University.
Impact on practice or Results: YACC and the research team built their relationship over a year while also identifying knowledge gaps and research questions. The following year, the research team worked closely with YACC to incorporate stakeholder feedback, paying attention to the ‘branding’ of the study to ensure that it had appeal to the YA demographic. As a result of these efforts, we were able to recruit a sample of 622 YAs from across Canada in just over one year, effectively creating the largest assessment of YAs with cancer ever undertaken in Canada.
Discussion or Conclusions: Collaborative patient-oriented research partnerships can be challenging to build and maintain. Our experience with the YACPRIME study provided us with the opportunity to develop skills and capacity in effectively co-creating and disseminating knowledge. We have continued to utilize the strength of YACC to ensure that YAs across Canada, especially the YAs who contributed to the YACPRIME study, are aware of the key findings as they emerge.