Rachel Ehrlich, Janet Ellis and Gary Rodin
What is distress?
Cancer is a complex illness in which the rapid uncontrolled growth of cells may lead to a clinical disease that is associated with significant distress and worry. According to the National Comprehensive Cancer Network (NCCN) in the US, cancer-related distress is characterized as having “an unpleasant psychological (cognitive, behavioural, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment” (1). High levels of psychological distress in cancer patients have been directly linked to a decrease in quality of life (2), reduced medical adherence (3) and increased physical distress. In turn, untreated physical symptoms are linked with increased emotional distress (4). Tools that monitor individual distress levels are essential when designing treatment plans tailored to patients’ needs. These include measures of physical symptoms, such as pain, fatigue and nausea, as well as measures of psychological symptoms such as depression and anxiety, and social difficulty (2-7).
Who is most likely to be distressed?
Distress may occur in a wide range of individuals in the context of the multiple stressors associated with cancer. However, factors associated with greater distress in cancer patients include
• younger age
• female gender
• lower socio-economic status
• longer duration of illness
• recent diagnosis (6)
• history of affective disorder or alcoholism (8).
A high level of cancer-related distress is found in 20-40% of patients, although only half of those distressed may be referred for specialized psychosocial care (1). Many of those who are most distressed do not receive or accept referral (9). Cancer patients who are older (10), or of lower socio-economic status or who have an avoidant coping style may be less likely to be referred (3).
Current state of distress screening practice
Standardized measures have been developed to quantitatively evaluate cancer-related distress in clinical settings. The NCCN outlines two phases of screening for distress. First, standardized measures are completed by patients. These may be nonspecific measures of distress, such as the Distress Thermometer (11), or specific measures of depression, anxiety, spiritual distress, social difficulty and physical symptoms. Second, scores on these measures are used to identify patients in distress, so that their concerns can be addressed by clinical staff or by referral to health professionals who specialize in psychosocial oncology or palliative care. Screening for distress is becoming a standard of care and is being introduced in cancer centers in Canada and throughout the world.
The introduction of screening tools in cancer clinics presents great opportunities but also potential challenges. These include ensuring that there are appropriate resources and opportunities to respond to the distress that is identified. This response may be provided by the medical treatment team or, when severe and persistent, by staff specialized in psychosocial oncology or palliative care. An accepting and informed attitude toward emotional distress in the clinic setting may help to diminish the stigma associated with such distress and with help-seeking (2). The removal of these attitudinal barriers allows patients to address their emotional concerns in an atmosphere tailored to their needs. These are among the challenges facing effective distress screening practices.
Current research and future directions
Despite the increase in overall research and implementation of brief screening tools, the practicality and effective application of distress screen measures remains unclear. Dr. Janet Ellis, a psychiatrist at Princess Margaret Hospital with Dr. Gary Rodin’s research group, is conducting a randomized controlled trial to explore the utility of distress screening. Her study is investigating the value of distress screening in patients with head and neck cancer who are currently undergoing radiation treatment, and elucidating barriers to the provision of psychosocial care. This population was chosen because of the unique challenges that this cancer type presents, and because it is known to be associated with a higher rate of psychiatric illness, suicide and substance use (5). Some patients with head and neck cancers may blame themselves for the disease, because of the possible association with smoking, drinking and human papilloma virus (5). Another contributory factor to distress in this population is that the required treatments may result in visible facial scarring or disfigurement, difficulties with chewing and swallowing, as well as other physical symptoms, such as pain. The hope for current and future distress screening is to draw the attention of clinicians to undetected suffering in cancer patients, so that appropriate interventions can be instituted. By ensuring that the assessment and treatment focus targets both physical and psychological suffering, cancer care can become more holistic and patient-centered.
Effective distress screening can identify specific types of distress in different cancer populations, increase comfort with more open communication in oncology clinics, and provide an opportunity for clinic staff to respond to distress. These interventions may include a variety of psycho educational, psychotherapeutic, social or pharmacological interventions (3), some of which can even be delivered by telemedicine, for those living far from treatment centers. Effective screening is a tool that can promote awareness of distress in the cancer setting and ensure that patients do not needlessly suffer from physical or emotional distress.
References
1 Cited with permission from The NCCN 1.2010 Distress Management Clinical
Practice Guidelines in Oncology. National Comprehensive Cancer Network, 2010. Available at http://www.nccn.org. Accessed [July 10, 2010] To view the most recent and complete version of the guideline, go online to www.nccn.org.
2 Vitek, L., Rosenzweig, M.Q., & Stollings, S. (2007). Distress in Patients With Cancer: Definition, Assessment, and Suggested Interventions. Clinical Journal of Oncology Nursing, 11(3). DOI:10.1188/07.CJON.413-418.
3 Holland, J.C., Kelly, B.J. & Weinberger, M.I. (2010). Why Psychosocial Care is Difficult to Integrate into Routine Cancer Care Stigma is the Elephant in the Room [Electronic version]. The official Journal of the National Comprehensive Cancer Network, 8(4), 362-366.
4 Rodin, G., Lo, C., Mikulincer, M.m Donner, A., Gagliese, L., & Zimmerman, C. (2009). Pathways to distress: The multiple determinants of depression, hopelessness, and the desire for hastened death in metastatic cancer patients. Social Science & Medicine, 68(3). DOI:10.1016/j.socscimed.2008.10.037.
5 Devins, G.M., Otto, K.J., Irish, J.C. & Rodin, G.M. (2010). Head and Neck Cancer. In J.C. Holland, W.S. Breitbart, P.B. Jacobsen, M.S. Lederberg, M.J. Loscalzo, & R.McCorkle (Eds.). Psycho-Oncology (2nd Ed.) (135-139). New York: Oxford University Press.
6 Carlson L.E., Angen, M., Cullum, J., Goodey, E., Koopmans, J., Lamont, L., […] Macrae, Martin, Pelletier, Robinson, Simpson, Speca, Tillotson & Bultz. (2004). High levels of untreated distress and fatigue in cancer patients [Electronic version]. British Journal of Cancer, 90, 2297-2304.
7 Chang, V.T., Hwang, S.S. & Feuerman, M.M.S. (2000). Validation of the Edmonton Symptom Assessment Scale. Cancer, 88(9). DOI: 10.1002/(SICI)1097-0142(20000501)88:9<2164::AID-CNCR24>3.0.CO; 2-5.
8 Massie M.J., & Holland J.C. (1990). Depression and the Cancer Patient. Journal of Clinical Psychiatry, 51. Suppl:12–17.
9 Graves, K.D., Arnold, S.M., Love, C.L., Kirsh, K.L., Moore, P.G., & Passik, S.D.(2007). Distress Screening in a Multidisciplinary Lung Cancer Clinic: Prevalence and Predictors of Clinically Significant Distress. Lung Cancer, 55(2).
DOI:10.1016/j.lungcan.2006.10.001.
10 Ellis, J., Lin, J., Walsh, A., Lo, C., Shepherd, F.A., Moore, M., Li, M., Gagliese, L., Zimmermann, C., & Rodin, G. (2008). Predictors of Referral for Specialized Psychosocial Oncology Care in Patients with Metastatic Cancer: the Contributions of Age, Distress, and Marital Status. Journal of Clinical Oncology, 27(5). DOI: 10.1200/JCO.2007.15.4864.
11 Jacobson, P.B., Donovan, K.A., Trask, P.C., Fleishman, S.B., Zabora, J., Baker, F. & Holland, J.C. (2005). Screening for Psychological Distress in Ambulatory Cancer Patients. American Cancer Society, 103(7). DOI: 10.1002/cncr.20940.