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Progress toward integrating Distress as the Sixth Vital Sign

a global snapshot of triumphs and tribulations in precision supportive care

Fradgley, Elizabeth A.a,*; Bultz, Barry D.b; Kelly, Brian J.c; Loscalzo, Matthew J.d; Grassi, Luigie; Sitaram, Brindhaf

Journal of Psychosocial Oncology Research and Practice: July 2019 - Volume 1 - Issue 1 - p e2
doi: 10.1097/OR9.0000000000000002
Original Article

Background: The International Psycho-Oncology Society (IPOS) recognizes psychosocial cancer care as a universal human right. IPOS emphasized that distress should be measured as the 6th Vital Sign alongside temperature, blood pressure, pulse, respiratory rate, and pain. To date, >75 cancer care organizations and accreditation bodies have endorsed screening, monitoring, and treating the multifactorial symptoms of distress as an essential component to high-quality care. The degree to which this international commitment has translated into the integration of precision supportive care within clinical settings is unknown.

Methods: Building upon a 2018 IPOS World Congress Symposium, this commentary provides 4 snapshots into the progress made toward integrating precision supportive care in India, Australia, Europe, and the United States. The commentary demonstrates the different approaches taken to develop screening practices or overcome barriers to comprehensive precision supportive care.

Results: Although psychosocial cancer care is a universal right, service and patient barriers to implementation remain, such as: inadequate workforce distribution and service investment in psychosocial care; siloed teams and limited communication skills; and cultural challenges. Recurrent themes emerged which can be used to invigorate commitment to IPOS standards: ongoing capacity building of the international psycho-oncology community; supporting communication skills training and encouraging programmatic thinking within services; and advocating for ongoing investment in precision supportive care through evaluation and strong clinical leadership.

Conclusions: In examining 4 unique settings, the commentary recognizes the geographic variation in health care resources and social contexts of cancer care alongside cultural perspectives on psychosocial distress, screening methods, and the value of precision supportive care.

aSchool of Medicine and Public Health, University of Newcastle, Newcastle, Australia

bCumming School of Medicine, University of Calgary, Calgary, Canada

cSchool of Medicine and Public Health, University of Newcastle, Newcastle, Australia

dDepartment of Supportive Medicine, City of Hope, Comprehensive Cancer Center, Duarte, CA

eInstitute of Psychiatry, University of Ferrara, Ferrara, Italy

fCenter of Psychooncology for Education and Research (COPER), Bangalore, Karnataka, India.

Corresponding author. Address: Level 4 West, HMRI Building, School of Medicine and Public Health, University of Newcastle, Callaghan, NSW 2308, Australia. E-mail address: (E.A. Fradgley).

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

EAF, BDB, BJK, MJL, LG, and BS participated in the research design, writing of the article, performance of the research, and participated in analysis.

Source of funding: EAF is supported by a CINSW ECR Fellowship and receives infrastructure support from the Hunter Medical Research Institute. For the remaining authors none were declared.

Received March 21, 2019

Accepted March 24, 2019

This is an open access article distributed under the Creative Commons Attribution License 4.0 (CCBY), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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1 Introduction

The National Comprehensive Cancer Network (NCCN) defines distress as a multifactorial, unpleasant emotional experience of a psychological, social, and/or spiritual nature that may interfere with an individual's ability to cope with a cancer diagnosis, symptoms, and treatment.[1] Distress screening is the standardized assessment of patients with the intent to identify key patient concerns, inform referral decisions specifically if more extensive assessment and psychosocial support services are warranted, and most importantly to treat those symptoms identified in screening .[2] In 2010, the International Psycho-Oncology Society (IPOS) provided an international quality standard related to distress assessment and management.[3] The IPOS International Standard of Quality Cancer Care emphasized that psychosocial cancer care should be recognized as a universal human right; high-quality cancer care must integrate the psychosocial domain into routine care; and finally, that distress should be measured as the 6th Vital Sign alongside temperature, blood pressure, pulse, respiratory rate, and pain.[4,5] This standard strengthens international and national efforts to improve cancer care for the whole patient and for all patients. As part of IPOS’ ongoing advocacy efforts, >75 cancer organisations, societies and accreditation bodies have now formally endorsed screening, monitoring, and treating distress as a fundamental component to high-quality cancer care.[6]

The importance of symptom monitoring throughout the full course of cancer treatment and survivorship has been highlighted in a recent randomized clinical trial reporting improved outcomes and survival in patients receiving systematic symptom outcome monitoring.[7] Psychosocial symptom monitoring would facilitate “precision” supportive care in cancer. This model of precision supportive care would align with similar frameworks applied to other cancer therapies and relies upon tailoring biopsychosocial interventions to specific profiles of personal, social, and disease characteristics. This precision supportive care can be facilitated though Screening for Distress with systematic assessment and referral to the appropriate care provider in a timely way.

The international commitment to Screening for Distress is a promising step toward realizing integrated and precision supportive care. The degree to which this international commitment has translated into the integration of screening within clinical settings as usual practice is unknown; however, there are a growing number of global partnerships to build collective knowledge about the methods and strategies for implementation of Screening for Distress and precision supportive care.

The progress toward integrated precision supportive care formed the basis of a 2018 IPOS World Congress symposium. The symposium examined recent developments, challenges, and future directions. Building upon this symposium, this commentary further describes the progress made in integrating precision supportive care through distress screening and management in 4 unique international contexts. These contexts represent health systems at varying stages of integrating Screening for Distress as the 6th Vital Sign and were selected to highlight common successes along with inequities in precision supportive care at a global level.

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2 Case studies

2.1 Strategies to integrate Screening for Distress in cancer care: a snapshot from India

For a long time, India dwelled in a myth that their cancer patients do not experience psychological distress owing to strong family ties and spiritual ethos. This pervasive myth has contributed to the sluggish progress of psycho-oncology being incorporated into cancer care programs. Fortunately, these beliefs were dispelled by a nationwide study, which showed 92% of cancer patients are distressed; 40% in severe distress and 52% in mild to moderate distress.[8] The prevalence of distress is consistent with a more recent study inclusive of 200 patients with head and neck cancer, in which 45% met caseness for distress on the distress thermometer (DT).[9] Thus, demonstrating distress is indeed universal across low-, middle-, and high-income countries.

Despite the common occurrence of distress, the majority of patients in the Indian setting that require precision supportive care would be missed due to patient- and system-level barriers. For example, a previous study showed that of patients who were not referred for psycho-oncology service, 72% were in distress when screened.[10] Suggested barriers include large patient volumes, meager manpower, and lack of routine distress screening practices.

The integration of Screening for Distress and precision supportive care within Indian cancer centers is further challenged by poor patient comprehension of the DT (eg, assigning emotion a numerical value on the visual analogue scale), language barriers, and lack of culture-specific screening measures.[11] However, despite these barriers there is widespread awareness of the NCCN distress management guidelines among psycho-oncologists who also endorse psychosocial care as an integral part of cancer care in Indian centers. Nearly 91% of psycho-oncologists are engaged in routine screening at various points along the cancer trajectory.[11]

Given the restrictive cancer care professional to patient ratio (1 doctor: 43 patients; 1 nurse: 85 patients; 1 nurse assistant: 34 patients), Dessai et al (2015)[12] concluded that routine screening is not feasible in an Indian setting without further capacity building. Limited availability of health professionals to conduct screening is a system-level barrier and is likely to be experienced by other low- to middle-income countries. However, recognizing the importance of routine screening, psycho-oncologists across the country have made several attempts to increase the feasibility of screening and tailor assessment tools to the unique cultural beliefs of Indian cancer patients. This includes translating the DT to local Indian languages and developing culturally relevant screening tools to suit the Indian ethos.[13] Finally, India has a dedicated Center Of Psycho-Oncology for Education and Research (COPER) as part of Health Care Global. COPER has successfully implemented distress screening and psychosocial care in their institution protocol. To create critical mass of manpower, COPER has developed a structured clinical psycho-oncology training program and deployed 15 psycho-oncologists across 10 of its 26 cancer centers in India.[11] These capacity-building initiatives bolster India's commitment to implementing precision supportive care through routine Screening for Distress and integrating psycho-oncology into mainstream cancer care in the foreseeable future.

This snapshot demonstrates India's success in adapting existing screening procedures developed in high-income settings to low-resource settings and highlights the rapid capacity-building strategies of an emerging psycho-oncology community. From an efficiency perspective, these strategies are not just applicable to other low-resource settings but have essential learnings for high-resource settings who must increasingly compete with other health service priorities and directives.

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2.2 Evaluating the comprehensiveness and integration of precision supportive care: a snapshot from Australia

Australia was among the first countries in the early 2000s to develop comprehensive psychosocial guidelines for adults diagnosed with cancer.[14] The Psycho-oncology Co-Operative Research Group (PoCoG) also emerged in 2005 to advance and advocate for the provision of psychosocial care.[14] PoCoG now has a membership of >1500 researchers and health professionals spanning Australia and New Zealand. PoCoG, along with other state-based organizations such as the Cancer Institute of New South Wales and Cancer Councils, has endorsed needs-based psychosocial support for cancer patients.[6]

The robust Australian psycho-oncology community and long-standing availability of psychosocial guidelines suggests there is a receptive climate for precision supportive care through Screening for Distress and assessment in health services. However, a study of 528 patients recruited from 6 Australian cancer services found only 58% of emotionally distressed patients were offered help.[15] Of those who were not offered help, the majority indicated that the clinical team was not aware of their emotional distress.[15] A subsequent national audit of 122 Australian cancer services’ distress screening practices indicated 38% never or rarely screen outpatients.[16]

Although the audit data demonstrated health services’ desire to improve distress screening practices, evaluating processes on a service-wide level also exposed several gaps in care models and organizations. Just over half (55%) of Australian cancer services reported completing a second assessment to confirm the source and severity of distress; less than one-third (31%) used a consistent referral pathway.[16] The lack of resources to action psychosocial referrals was perceived to pose a major barrier (38%) and would prevent implementation or improvement of distress management processes. This finding of limited service capacity is consistent with data emerging from India. However, the rate-limiting step in Australian services appears to have shifted toward the resources needed to action a referral as opposed to the capacity to screen.

The audit also revealed a crucial missed opportunity to meet one of the IPOS International Standard of Quality Cancer Care—the integration of the psychosocial domain into routine multidisciplinary care.[3] In the 74 cancer services with multidisciplinary team meetings, 61% of representatives indicated patients’ preferences and emotional well-being were always or often discussed (24% and 37% respectively). The remaining 39% indicated these psychosocial aspects of care were only occasionally (27%) or rarely (12%) discussed. Regardless of current integration, the majority of representatives (59%) reported that psychosocial aspects should be better communicated in multidisciplinary team meetings.

This snapshot demonstrates that the majority of Australian cancer services are committed to precision supportive care through implementation of Screening for Distress in some form. However, as distress is a vital sign, there is a responsibility to ensure distress scores are accurate through subsequent assessment and acted upon with evidence-based referrals. Designing more comprehensive distress management models is the next crucial improvement opportunity for the Australian psycho-oncology community. This snapshot also demonstrates that high-income countries will contend with a different set of resource restrictions and challenges in integrating precision supportive care in multidisciplinary care.

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2.3 Strengthening communication between health professionals and patients to facilitate precision supportive care: a snapshot from Europe

In 2008, The Council of the European Union (EU) resolved to reduce the burden of cancer in part through enhanced integration of psychosocial care.[17] This report included statements calling upon EU member states to follow a patient-centered, comprehensive, and interdisciplinary approach with optimal psychosocial care implemented in routine cancer care, rehabilitation, and post-treatment for all cancer patients.

This call to action applies to a substantial number of distressed cancer patients. For example, data compiled from 3 European countries reported 60% of patients met caseness for distress using the DT; 19% and 15% were assessed as moderately or severely distressed, respectively, and therefore warranted clinical attention.[18] In this multi-country study, distress was also related to doctor–patient relationship, with distressed patients being more likely to report dissatisfaction with health care professionals and specifically perceived disengagement and inadequate support. Communication skills training (CST) may assist health professionals to build positive therapeutical alliances with their distressed patients. For example, a Cochrane meta-analysis of 10 randomized controlled trials reported cancer professionals who completed CST were more likely to use open questions, show empathy toward patients, and less likely to give facts only.[19]

Theory-driven CST programs which empower clinicians to confidently initiate discussions around distress could have tremendous potential to identify needs and drive precision supportive care. However, this training must span the larger “program" of evidence-based distress management to also include introducing referrals and strengthening patients’ intention to use psychosocial support. For example, a mixed-methods longitudinal study of 333 cancer outpatients reported that 42% of patients with high distress (DT ≥5) did not intend to use the psycho-oncology service.[20] Furthermore, only 65% of those who intended to use the service had completed at least 1 appointment 4 months after initial screening.[20] Patients who intended to use the psycho-oncology service were motivated by their positive perceptions of the psycho-oncologist as an expert, desire for self-empowerment, and potential to prepare for physical and emotional deterioration. Communication by health professionals which emphasizes the value of the referral based on their distress levels could provide essential motivation to engage with supportive care services. Conversely, patients with no intention to use the service commonly reported that they felt adequately supported by their social network, were currently mentally and physically well, and did not think psychological support would be helpful. This type of information may not be readily volunteered by patients and may require a careful conversation which explores patients’ resilience and existing supports.

In 2018, the third European consensus meeting on CST in oncology was held to review existing CST approaches and the valid criticisms within such approaches.[21] The recommendations state that to provide patient-centered care, future CST programs should empower health professionals to recognize and understand the patient's psychological state and use this clinical information to guide communication with the patient and their loved ones. This focus on identification and referral is a fundamental tenant behind precision supportive care. Furthermore, these recommendations provide clear guidance on the necessary conditions for CST implementation such as mandating training, involvement of service directors, and accreditation standards.[22]

This snapshot demonstrates the need to examine the patient–professional barriers to precision supportive care. This includes conceptualizing screening as a communication tool when assessing distress levels and encouraging patients to action supportive care referrals. Each patient assessment is an invaluable opportunity to provide precision supportive care by identifying and responding to the evolving emotional needs and experiences of distressed patients throughout their cancer journey—to think like a program.[23] With CST, health professionals may be able to encourage distressed cancer patients’ help-seeking behaviors by normalizing the need for psychosocial support and communicating the value of these services as an integral and evidence-based component of cancer care.

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2.4 Advocating for service investment and clinical leadership in precision supportive care: a snapshot from the United States

In 2015, Hammer et al conducted a cross-sectional audit of United States’ (US) National Cancer Institute cancer centers’ supportive care programs. This audit reported distress screening processes were in operation in 64% of the 31 responding centers.[24] These audit results were compared to a survey of supportive care provision conducted in 1994.[25] The comparison highlighted the increasing number of supportive care services and improved perceptions of the quality of these services.[24] The comparison also revealed sustainability concerns for the psycho-oncology community. First, there was a 29% decrease in the number of institutions offering professional education. With increasing recognition of burn-out, the ethos of “thinking like a program" should not be limited to patients and be extended to support the health professionals working with distressed cancer patients. To enhance the skills and mental resilience of our psycho-oncology teams, comprehensive and programmatic training is required with elements of peer-support, debriefing, and clinical supervision.

Second, only 54% of services reported evaluating their supportive care programs for efficiency and effectiveness; albeit this rate is higher than that reported by cancer services (22%) in the aforementioned Australian audit.[16] Robust recent outcome data can reinforce individuals’ commitment to screening and reassure service administrators who have committed finite resources to this clinical activity. This outcome data would ideally include costing information, and economic analyses in precision supportive care. Clinical leaders who champion precision supportive care must strategically present the long-term benefits alongside costs of such an approach and will be unable to do so without such data.

Psycho-oncologists are ideal clinical champions given their communication and counseling training, access to immediate feedback from patients, and working knowledge of complex health systems as service-embedded professionals.[26] A specialized skill-set to act as a psycho-oncology champion is needed to navigate interpersonal professional and discipline conflicts inherent in introducing any organizational change. The difficulty of this change will be further compounded by the need to build or maintain multidisciplinary teams essential to comprehensive precision supportive care. For example, previous research has reported that in the majority of cases (71%), specific psycho-oncologic services within health institutions are carried out by teams of single professional profiles.[27] Although there is broad support for distress management among psycho-oncologists, the finer details and the way in which the process is standardized and integrated into routine practice may be met with resistance, even within the psychosocial team.[26]

Finally, these clinical leaders will also be tasked with drawing in the inclusive workforce needed to adequately respond to the diversity of patient needs and cultural backgrounds.[28] Our most vulnerable patient groups are comprised of linguistically diverse and socioeconomically disadvantaged individuals. Across other disciplines, change champions or clinical leaders are increasingly recognized as a promising implementation strategy. However, there is little information on how to select for and support this specialized skill set within psycho-oncology.

This snapshot provides insight into the evolution of the American psycho-oncology community over several decades and the progress made toward more comprehensive services. The snapshot also demonstrates the need for a strong clinical leadership and robust data to justify ongoing investment in precision supportive care.

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3 The key messages and future directions

Collectively, these case studies provide a snapshot of the tremendous progress made toward recognizing Distress as the 6th Vital Sign.[4] Despite vast differences between the countries, recurrent themes emerge suggesting a culture shift is needed to include routine Screening for Distress and the appropriate referrals for distress within health systems. This shift could be facilitated by the following strategies:

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3.1 Capacity building of the international psycho-oncology community to deliver precision supportive care

Drawing together the Indian, Australian, North American, and European experiences, the psycho-oncology community should remain vigilantly focused on capacity building and training regardless of the stage of integrating Screening for Distress as the 6th Vital Sign. Psycho-oncology clinicians have a broad role to play in this regard—as clinical leaders, they will be tasked with promoting system change, providing education to ensure commitment to screening, and demonstrating clinician confidence to implement precision supportive care in a clinically effective and appropriate manner. This form of clinical leadership must be nurtured and encouraged.

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3.2 Communication training and thinking like a program

To realize the true potential of distress as the 6th Vital Sign, it is essential to “think as a program" and move beyond tokenistic screening and individualistic interactions. Screening tools are a means of focusing attention on a critical set of tasks in patient care, to remind clinicians of the broader set of patient needs, and facilitate communication—not replace it. As such, distress screening and assessment should be conceptualized and branded in part as a communication tool. There are several validated screening tools available which could be used to quickly initiate discussion. These tools take a variety of approaches and examples include the DT, Emotion Thermometer, Patient Health Questionnaire (2 and 4), Edmonton Symptom Assessment Scale, and SupportScreen.[1,29–31] Use of these tools is only one of the first steps to providing evidence-based precision supportive care. To facilitate programmatic thinking, communication skills must be strengthened between clinicians and patients to encourage referral uptake of psychosocial support.

The concept that distress screening can provide a guide or tool to facilitate more effective communication in addition to symptom monitoring, is powerful and applicable to the rapidly accelerating patient-reported outcome measure (PROMs) movement. It is imperative that the wider field critically and collaboratively reflects on the preceding strategies which have been proven effective in measuring and responding to patient-reported concerns (such as pain, distress, or fatigue). More importantly, as one of the first PROMs, integration of Screening for Distress provides essential learnings applicable to the wider PROM movement: screening alone is not sufficient to improve patient outcomes; comprehensive implementation and evaluation strategies are required; and this clinical activity requires robust support by multidisciplinary teams.

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3.3 Advocating for ongoing investment

Distress screening and assessment provides not only a communication tool for clinicians and patients, but a way to advocate for the inclusion of precision supportive care at a system-level. As with any clinical activity, distress assessment and management incur an opportunity cost. This opportunity cost must be considered as an appropriate investment by service directors and providers. It is essential that psycho-oncology research includes cost-effectiveness analyses and that health services are supported to complete comprehensive evaluation. The evaluation should also provide more frequent “data snapshots" as encouragement to health teams amidst increasing professional burnout. These data will also provide opportunities for health services to develop ownership of precision supportive care and refine the screening processes to meet their unique setting and challenges.[26]

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4 Conclusions

Overall, the recurrent issues surrounding the implementation of Screening for Distress in cancer care provides a window into the barriers in improving overall quality of psychosocial care in cancer at a clinician, patient, system, and cultural level. The integration of Distress as the 6th Vital Sign will be continually challenged by inconsistent or very limited resource allocation, varying levels of health professional commitment and training, and the ongoing battle to justify this clinical activity in time-poor settings.[26] It is important to recognize the disparities in availability of cancer services within and across nations globally, as well as the role of cultural perspectives on appropriate methods for Screening for Distress.

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5 Conflicts of interest statement

The authors declare that they have no financial conflict of interest with regard to the content of this report.

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The authors acknowledge Ms Kate Booth for reviewing drafts of this article.

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Cancer care; Clinical leadership; Communication skills training; Distress screening; Psycho-oncology; Psychosocial; Supportive care

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