Distress Screening and Referral Are Key for Patients With Cancer

September 1, 2019
ALEXANDRA ZALETA, PHD, Senior Director of Research Cancer Support Community

Oncology Nursing News, September 2019, Volume 13, Issue 7

Providing patients and clinicians with a distress screening and referral program that is comprehensive, easily accessible (ie, online), and patient centered in terms of resource/referral preferences can benefit patients and, potentially, the broader system of care.

It was estimated that there would be more than 1,700,000 new cases of cancer in the United States in 2019.1 Many patients will receive state-of-the-science biomedical treatment but will not receive care that adequately assesses or addresses their psychosocial concerns.2 This is problematic in part because distress and unmet psychosocial needs can have adverse implications for health outcomes, health service use, treatment adherence, and healthcare costs.3,4 Further, research suggests that treating and addressing patients’ distress can lead to improved overall health and reduced healthcare costs.5,6


Given the immediate and long-range implications of distress among persons with cancer, the Institute of Medicine7 and the National Comprehensive Cancer Network (NCCN)8 have recognized that screening, referral, and follow-up for psychosocial concerns are critical to ensuring quality cancer care for the whole patient. Further, the Commission on Cancer of the American College of Surgeons released accreditation standards requiring practices to screen cancer patients for psychosocial distress9, and the American Society of Clinical Oncology (ASCO) recommends regular screening of adults with cancer for depression and anxiety.10

Providing patients and clinicians with a distress screening and referral program that is comprehensive, easily accessible (ie, online), and patient centered in terms of resource/referral preferences can benefit patients and, potentially, the broader system of care. A number of validated measures exist to assess distress11-13 and identify areas of unmet need.14,15 Among the tools that assess patient preference for help, few ask the patient to delineate the type of help they wish to receive or have the ability to integrate across electronic systems via a web-based platform. Even fewer were developed and validated for use in community-based care settings, despite the fact that a majority of patients are treated in community cancer centers, hospitals, and private practices.16


The Cancer Support Community developed CancerSupportSource (CSS), a web-based psychosocial distress screening, follow-up, and referral program to assist community-based cancer centers in meeting distress screening accreditation standards linked to patient-centered cancer care17 and facilitate access to and provision of psychosocial care to patients in the community. The initial theoretical framework and item content of CSS are grounded in the critical domains of psychosocial, practical, and physical needs.7,18

Further, the design of the screening program reflects Cancer Support Community’s model of patient empowerment.19 In this model, patients are supported and encouraged to identify their needs and play an active role in partnering with their healthcare providers, make important lifestyle changes, and enhance their ability to access information and resources that can address their needs.

Five factors were identified and confirmed:

1. Emotional well-being

2. Symptom burden and impact

3. Body image and healthy lifestyle

4. Healthcare team communication

5. Relationships and intimacy

CSS is a reliable, valid, multidimensional distress screening program with the capacity to identify those at risk of significant anxiety and depression, known indicators of poor health outcomes.20-23 The study findings provide the psychometric foundation to support the use of CSS in community-based and hospital-based oncology settings, and CSS is currently implemented across a network of community-based cancer support facilities (eg, Cancer Support Community, Gilda’s Club), as well as oncology practices and hospital cancer centers nationwide.

The tool demonstrates strong internal consistency reliability and test-retest reliability, a factor structure that is replicable, and adequate convergent and divergent validity. Additionally, the depression and anxiety risk scales demonstrate high sensitivity coupled with adequate specificity. When implemented in oncology practice, this tool fulfills the American College of Surgeons Commission on Cancer patient-centered standards for distress screening,9 NCCN Guidelines for distress management,8 and ASCO Quality Oncology Practice Initiative certification standards.24


1. American Cancer Society. Cancer Facts & Figures 2019. https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2019.html Updated 2019. Accessed July 2019.

2. Forsythe LP, Kent EE, Weaver KE, et al. Receipt of psychosocial care among cancer survivors in the United States. J Clin Oncol. 2013;31(16):1961-1969. doi: 10.1200/JCO.2012.46.2101.

3. Buzaglo JS, Miller MF, Karten C, Longacre ML, Onukwugha E, Weiss ES. Medication adherence among patients with chronic myeloid leukemia: the impact of financial burden and psychosocial distress. J Oncol Navig Surviv. 2017;8(4). jons-online.com/issues/2017/april-2017-vol-9-no-4/1618-medication-adherence-among-patients-with-chronic-myeloid-leukemia-the-impact-of-financial-burden-and-psychosocial-distress. Published April 2017. Accessed TK.

4. Han X, Lin CC, Li C, et al. Association between serious psychological distress and health care use and expenditures by cancer history. Cancer. 2015;121(4):614-22. doi: 10.1002/cncr.29542.

5. Azuero C, Allen RS, Kvale E, Azuero A, Parmelee P. Determinants of psychology service utilization in a palliative care outpatient population. Psychooncology. 2014;23(6):650-657. doi: 10.1002/pon.3454.

6. Carlson LE, Bultz BD. Efficacy and medical cost offset of psychosocial interventions in cancer care: making the case for economic analyses. Psychooncology. 2004;13(12):837-849; discussion 850-856. doi: 10.1002/pon.832.

7. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC: Institute of Medicine; 2008. Report No. 9780309111072.

8. National Comprehensive Cancer Network. Distress management. clinical practice guidelines. J Natl Compr Canc Netw. 2003;1(3):344-374.

9. American College of Surgeons Commission on Cancer. Cancer program standards: ensuring patient-centered care. facs.org/~/media/files/quality%20programs/cancer/coc/2016%20coc%20standards%20manual_interactive%20pdf.ashx. Published 2016. Accessed TK.

10. Andersen BL, DeRubeis RJ, Berman BS, et al; American Society of Clinical Oncology. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation. J Clin Oncol. 2014;32(15):1605-1619. doi: 10.1200/JCO.2013.52.4611.

11. Jacobsen PB, Donovan KA, Trask PC, et al. Screening for psychologic distress in ambulatory cancer patients. Cancer. 2005;103(7):1494-1502. doi: 10.1002/cncr.20940.

12. Watanabe SM, Nekolaichuk CL, Beaumont C. The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: development and refinement. Psychooncology. 2012;21(9):977-985. doi: 10.1002/pon.1996.

13. McCorkle R, Young K. Development of a symptom distress scale. Cancer Nurs. 1978;1(5):373-378.

14. Hodgkinson K, Butow P, Hunt GE, et al. The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure). Psychooncology. 2007;16(9):796-804. doi: 10.1002/pon.1137.

15. Lowery AE, Greenberg MA, Foster SL, et al. Validation of a needs-based biopsychosocial distress instrument for cancer patients. Psychooncology. 2012;21(10):1099-1106. doi: 10.1002/pon.2008.

16. Johnson MR, Clauser SB, Beveridge JM, O'Brien DM. Translating scientific advances into the community setting. Oncology Issues. 2009;24(3):24-28. doi: 10.1080/10463356.2009.11883440.

17. Miller MF, Mullins CD, Onukwugha E, Golant M, Buzaglo JS. Discriminatory power of a 25-item distress screening tool: a cross-sectional survey of 251 cancer survivors. Qual Life Res. 2014;23(10):2855-2863. doi: 10.1007/s11136-014-0742-4.

18. Guide to Implementing Screening for Distress, the 6th Vital Sign: Moving Towards Person-Centered Care. Toronto, ON: Canadian Partnership Against Cancer; May 21, 2009.

19. Golant M, Buzaglo J, Thiboldeaux K. The engaged patient: the Cancer Support Community's integrative model of evidence-based psychosocial programs, services, and research. In: Holland JC, Breitbart WS, Butow PN, Jaconsen PB, Loscalzo MJ, McCorkle R, eds. Psycho-Oncology. 3rd ed. New York, NY: Oxford University Press; 2015.

20. Punnen S, Cowan JE, Dunn LB, Shumay DM, Carroll PR, Cooperberg MR. A longitudinal study of anxiety, depression and distress as predictors of sexual and urinary quality of life in men with prostate cancer. BJU Int. 2013;112(2):E67-E75. doi: 10.1111/bju.12209.

21. Chambers SK, Baade P, Youl P, et al. Psychological distress and quality of life in lung cancer: the role of health-related stigma, illness appraisals and social constraints. Psychooncology. 2015;24(11):1569-1577. doi: 10.1002/pon.3829.

22. Stafford L, Judd F, Gibson P, Komiti A, Mann GB, Quinn M. Anxiety and depression symptoms in the 2 years following diagnosis of breast or gynaecologic cancer: prevalence, course and determinants of outcome. Support Care Cancer. 2015;23(8):2215-2224. doi: 10.1007/s00520-014-2571-y.

23. Roth RS, Lowery JC, Davis J, Wilkins EG. Psychological factors predict patient satisfaction with postmastectomy breast reconstruction. Plast Reconstr Surg. 2007;119(7):2008-2015; discussion 16-7. doi: 10.1097/01.prs.0000260584.09371.99.

24. QOPI Certification Program. American Society of Clinical Oncology website. practice.asco.org/quality-improvement/quality-programs/qopi-certification-program. Accessed TK.