Since the 1970s, investigations of cancer-related psychological distress have consistently reported prevalence rates ranging between 20% and 40%.1–6 Distress, as defined by NCCN, is “a multifactorial unpleasant emotional experience of a psychological…social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.”7 Distress is not a diagnosable disorder. Like fever or high blood pressure, distress is an indicator—a psychosocial marker—of conditions requiring further clinical evaluation and response, including redress of the distress itself. Elevated distress may suggest that depression or anxiety are present at clinically significant levels, or that a patient is struggling with co-occurring physical, psychological, social, or spiritual-existential challenges that are likely to disrupt adherence to therapy.8
Distressed patients tend to experience poorer health outcomes, greater mortality and morbidity, poorer immune function, and greater healthcare expenditures.9 Distress also contributes to greater service use.10–12 In 2007, the Institute of Medicine (now Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine) identified critical shortcomings in the delivery of psychosocial care for patients with cancer and their families, particularly with regard to the detection of psychological distress.13 In response, the American College of Surgeons' Commission on Cancer (CoC), the primary accrediting body for as many as 1,500 cancer-treating programs serving approximately 70% of US patients with cancer, established new accreditation standards for patient-centered care, including Standard 3.2, a mandate requiring that all patients be screened for distress and that there be an appropriate clinical response when patients are identified as distressed.14
Evidence of the effect of distress screening on patient and institutional outcomes is mixed and underdeveloped. Some studies suggest that screening results in reductions in emotional distress, better quality of life, and improved patient–provider communication, along with increases in appropriate referral to psychosocial care providers.15,16 Others suggest that screening patients for distress may be of minimal benefit.17,18 Lacking, however, are studies demonstrating the effect of both screening and appropriate clinical response on patient and institutional outcomes.19,20 Just as we do not expect blood pressure screening alone to reduce symptoms of cardiovascular disease or stroke, we should not expect distress screening alone to improve outcomes.12 There must also be an appropriate clinical response when risk conditions are detected, because patient outcomes are improved after receipt of evidence-based psychosocial support interventions.21–25
Although now required as a component of quality psychosocial care, the CoC's distress screening standard does not prescribe a screening instrument nor dictate when or how often screening is to occur, other than at a “pivotal visit.” The standard also does not dictate how providers must respond to distressed patients. Cancer programs determine their own protocols for clinical response (eg, immediate contact with a social worker, referral to supportive care services). Thus, given that individual cancer programs vary in their algorithms and pathways for how and when they screen for distress and respond to patients, the primary purpose of this study was to examine the capacity of individual cancer programs to adhere to their own prescribed distress screening protocols. It also examined the extent to which protocol adherence was associated with subsequent medical service utilization, specifically rates of emergency department (ED) use and hospitalization. We hypothesized that higher rates of service utilization would be associated with lower rates of adherence to screening protocols, after controlling for select patient and institutional factors.
The authors wish to express their gratitude to Nina Miller, Krista Nelson, Sylvia Czisek, and Ryan McDougald for their assistance in preparing this manuscript, and to all of the APAQCC participants from the following cancer programs: Ann B. Barshinger Cancer Institute, Lancaster General Health, Lancaster, PA; Aspirus Regional Cancer Center, Wausau, WI; Athens Regional Medical Center, Athens, GA; Atlanta Cancer Care, Decatur, GA; Avera Cancer Institute, Sioux Falls, SD; Baptist Health Louisville Cancer Care Center, Louisville, KY; Beth Israel Deaconess Medical Center, Boston, MA; Bon Secours Richmond Health System, Midlothian, VA; Carolinas HealthCare System, Rutherford College, NC; Catawba Valley Medical Center, Hickory, NC; Central Maine Medical Center, Lewiston, ME; City of Hope National Medical Center, Duarte, CA; Duke Cancer Center, Durham, NC; Ellis Fischel Cancer Center/University of Missouri Health Care, Columbia, MO; Emory Saint Joseph's Hospital, Atlanta, GA; Cancer Center at Faxton St. Lukes Healthcare, Utica, NY; Good Samaritan Oncology/Hematology Associates, Lebanon, PA; GW Medical Faculty Associates, Washington, DC; Hannibal Regional Hospital/James E Cary Cancer Center, Hannibal, MO; Health Alliance Hospital of the Hudson Valley, Kingston, NY; Josephine Ford Cancer Institute, Henry Ford Health System, Detroit, MI; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Louis Stokes Cleveland VA Medical Center, Cleveland, OH; Mary Bird Perkins – Our Lady of the Lake Cancer Center, Baton Rouge, LA; Mayo Clinic Health System – Franciscan Healthcare, LaCrosse, WI; Mayo Clinic Health System Mankato, Mankato, MN; McLeod Regional Medical Center, Florence, SC; Medstar Georgetown University Hospital, Washington, DC; Memorial Regional Cancer Center, South Bend, IN; Mercy Hospital and Medical Center, Chicago, IL; Mercy Medical Center, Cedar Rapids, IA; MetroHealth Cancer Care Center, Cleveland, OH; Mount Sinai Hospital, Chicago, IL; Nash Cancer Treatment Center, Rocky Mount, NC; Northwestern Memorial Hospital, Chicago, IL; Oregon Health & Science University Knight Cancer Institute, Portland, OR; Park Ridge Health, Hendersonville, NC; Presbyterian Healthcare Services, Albuquerque, NH; Princess Margaret Cancer Centre, Toronto, ON; Promedica Hickman Cancer Center, Sylvania, OH; Providence Cancer Center, Portland, OR; Roger Williams Medical Center, Providence, RI; Sharp Memorial Hospital Outpatient Cancer Institute, San Diego, CA; St. Dominic Cancer Center, Jackson, MS; St. Joseph Comprehensive Cancer Center, Denver, CO; St. Jude Medical Center, Fullerton, CA; St. Luke's Hospital and Center for Cancer Care, Chesterfield, MO; St. Luke's Mountain States Tumor Institute, Boise, ID; St. Mary's Hospital Center, Montreal, Canada; Sutter Medical Center-Sutter Medical Foundation, Sacramento, CA; The Center for Cancer Prevention and Treatment – St. Joseph Hospital, Orange, CA; The Dale and Frances Hughes Cancer Center at Lehigh Valley Hospital–Pocono, East Stoudsburg, PA; The DeCesaris Cancer Institute at Anne Arundel Medical Center, Annapolis, MD; McGlinn Cancer Institute, West Reading, PA; UC Davis Comprehensive Cancer Center, Sacramento, CA; UM Upper Chesapeake Medical Center, Kaufman Cancer Center, Bel Air, MD; University of Colorado Cancer Center, Aurora, CO; University of Kentucky Markey Cancer Center, Lexington, KY; Vermont Cancer Center/Fletcher Allen Health Care, Burlington, VT; Wellspan York Cancer Center, York, PA.
Carlson LE, Waller A, Mitchell AJ. Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol 2012;30:1160–1177.
Carlson LE, Angen M, Cullum J et al. . High levels of untreated distress and fatigue in cancer patients. Br J Cancer 2004;90:2297–2304.
Zabora JR, BrintzenhofeSzoc K, Curbow B et al. . The prevalence of psychological distress by cancer site. Psychooncology 2001;10:19–28.
Zabora JR, Blanchard CG, Smith ED et al. . Prevalence of psychological distress among cancer patients across the disease continuum. J Psychosoc Oncol 1997;15:73–87.
Gao W, Bennett M, Stark D et al. . Psychological distress in cancer from survivorship to end of life care: prevalence, associated factors and clinical implications. Eur J Cancer 2010;46:2036–2044.
Holland JC, Jacobsen PB, Andersen B et al. . NCCN Clinical Practice Guidelines in Oncology for Distress Management, Version 2.2016. Accessed February 9, 2017. To view the most recent version of these guidelines, visit NCCN.org.
Pirl WF, Jacobsen PB, DeShields TL. Opportunities for improving psychosocial care for cancer survivors. J Clin Oncol 2013;31:1920–1921.
Barrera I, Spiegel D. Review of psychotherapeutic interventions on depression in cancer patients and their impact on disease progression. Int Rev Psychiatry 2014;26:31–43.
Han X, Lin CC, Li C et al. . Association between serious psychological distress and health care use and expenditures by cancer history. Cancer 2015;121:614–622.
Hollingworth W, Metcalfe C, Mancero S et al. . Are needs assessments cost effective in reducing distress among patients with cancer? A randomized controlled trial using the distress thermometer and problem list. J Clin Oncol 2012;31:3631–3638.
Carlson LE. Screening alone is not enough: the importance of appropriate triage, referral, and evidence-based treatment of distress and common problems. J Clin Oncol 2013;31:3616–3617.
Institute of Medicine. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC: The National Academies Press; 2008.
Commission on Cancer. Cancer Program Standards: Ensuring Patient-Centered Care. Available at: https://www.facs.org/quality-programs/cancer/coc/standards. Accessed February 9. 2017.
Chiang AC, Amport SB, Corjulo D et al. . Incorporating patient-reported outcomes to improve emotional distress screening and assessment in an ambulatory oncology clinic. J Oncol Pract 2015;11:219–222.
Carlson LE, Groff SL, Maciejewski O, Bultz BD. Screening for distress in lung and breast cancer outpatients: a randomized controlled trial. J Clin Oncol 2010;28:4884–4891.
Meijer A, Roseman M, Delisle VC et al. . Effects of screening for psychological distress on patient outcomes in cancer: a systematic review. J Psychosom Res 2013;75:1–17.
Zebrack B, Burg M, Vaitones V. Distress screening: an opportunity for enhancing quality cancer care and promoting the oncology social work profession. J Psychosoc Oncol 2012;30:615–624.
Faller H, Schuler M, Richard M et al. l. Effects of psycho-oncologic interventions on emotional distress and quality of life in adult patients with cancer: systematic review and meta-analysis. J Clin Oncol 2013;31:782–793.
Schneider S, Moyer A, Knapp-Oliver S et al. . Pre-intervention distress moderates the efficacy of psychosocial treatment for cancer patients: a meta-analysis. J Behav Med 2010;33:1–14.
Meyer TJ, Mark MM. Effects of psychosocial interventions with adult cancer patients: a meta-analysis of randomized experiments. Health Psychol 1995;14:101–108.
Cwikel J, Behar L, Rabson-Hare J. A comparison of a vote count and a meta-analysis review of intervention research with adult cancer patients. Res Soc Work Pract 2000;10:139–158.
McQuellon RP, Danhauer SC. Psychosocial rehabilitation in cancer care. In: Chang AE, Ganz PA, Hayes DF et al. , eds. Oncology: An Evidence-Based Approach. New York, NY: Springer; 2006:1942–1954.
Zebrack B, Kayser K, Padgett LS et al. . Institutional capacity to provide psychosocial oncology support services: a report from the Association of Oncology Social Work. Cancer 2016;122:1937–1945.
McCaskill-Stevens W, McKinney MM, Whitman CG, Minasian LM. Increasing minority participation in cancer clinical trials: the minority-based community clinical oncology program experience. J Clin Oncol 2005;23:5247–5254.
Raudenbush SW, Bryk AS. Hierarchical Linear Models: Applications and Data Analysis Methods. Thousand Oaks, CA: Sage Publications; 2002.
Madden JM, Lakoma MD, Rusinak D et al. . Missing clinical and behavioral health data in large electronic health record (EHR) systems. J Am Med Inform Assoc 2016;23:1143–1149.
Berger ML, Curtis MD, Smith G et al. . Opportunities and challenges in leveraging electronic health record data in oncology. Future Oncol 2016;12:1261–1274.
Barbera L, Sutradhar R, Howell D et al. . Does routine symptom screening with ESAS decrease ED visits in breast cancer patients undergoing adjuvant chemotherapy? Support Care Cancer 2015;23:3025–3032.
Manzano J, Luo R, Elting LS, Suarez-Almazor M. Unplanned hospitalizations among gastrointestinal cancer patients in the state of Texas [abstract]. J Clin Oncol 2013;31(Suppl):Abstract 6634.