What Does Evidence-based Mean at The Cancer Support Community?
Mitch Golant, Ph.D., VP Research & Development for The Cancer Support Community National reported that Harold Benjamin, PhD, Founder of The Wellness Community understood distress and the psychosocial oncology. He defined evidence-based interventions defined and the link between evidence-based research and CSC’s Patient Active Concept. Research on Support Groups, Psycho-educational programs, Stress-reduction exercises and online Support Groups bore out Dr. Benjamin's philosophy that educated and involved patients benefit by their involvement and increased knowledge.
Evidence-based Research is psychosocial research published in peer reviewed & practice journals. It is the “Gold Standard” in research is randomized clinical trials (RCT). These studies have given CSC and credibility with health care professionals and patients.; a unique Identity in the cancer community; provided new program ideas; improved quality assurance; and, it is hoped, inspiration for critically needed funding.
Distress is common for those facing cancer diagnosis and as well as for their loved ones. Unpleasant emotional experiences can impact cognitive, behavioral, social, emotional and spiritual functioning. Distress may interfere with ability to cope effectively with cancer, its physical symptoms and treatment. 47% of cancer patients have distress severe enough to qualify for psychiatric diagnosis. Emotional distress is the most underreported and most common side effect of cancer.
Identifying symptoms of distress is important. Spectrum of feelings range from sad, fearful, angry and unhappy to severe depression, panic and debilitating anxiety. It is important to monitor the chronicity and severity of symptoms. Reliable indicators include: persistent depressed or angry mood and lack of pleasure in activities. While symptoms of fatigue, insomnia, eating disturbance, decreased libido may signal but are not necessarily reliable indicators of depression which decreases the quality of life.
Psychosocial Oncology studies the impact of psychological reactions on physiological processes and health outcomes, one's psychological reactions to a cancer diagnosis, utilizes interventions designed to help alleviate pain, fatigue, depression, trauma and improve health behaviors
Evidence-based Research has shown CSC’s Patient Active Concept is valid. CSC has designed its program interventions based upon a model of conscious change and actions leading to improved quality of life and enhanced possibility of recovery. All support groups, educational programs (physician lectures, stress reduction exercises, Frankly Speaking Series, etc.) are designed to reduce stress, improve quality of life and thereby enhance immune function through active engagement in the treatment and management of the illness.
CSC programs include the findings from: Psychosocial Oncology Research published by other scientists or academics; Psychosocial Oncology Research published with CSC in partnership with our academic and scientific partners; and Community-Initiated Research Collaborations. CSC program philosophy, founded upon the unique Patient Active Concept, states that “Patients who participate in their fight for recovery along with their healthcare team, rather than acting as hopeless, helpless, passive victims of the illness, will improve the quality of their lives and may enhance the possibility of recovery." “Combining the will of the patient with the skill of the physician - A powerful combination.” - Harold Benjamin, Ph.D., Founder
“Fighting spirit” research by Watson and Greer (1991) indicated those who questioned their doctors and were more active in their treatment did better (improved quality of life).
- Watson M, Greer S, Rowden L, Gorman C, Robertson B, Bliss JM, Tunmore R. Relationships between emotional control, adjustment to cancer and depression and anxiety in breast cancer patients. Psychological Medicine 1991;21:51– 7.
- Watson M, Haviland JS, Greer S, Davidson J, Bliss JM., Influence of psychological response on survival in breast cancer: a population-based cohort study. Lancet. 1999 Oct 16;354(9187):1331-6.
- Cordova MJ, Giese-Davis J, Golant M, Kronnenwetter C, Chang V, McFarlin S, Spiegel D., Mood disturbance in community cancer support groups. The role of emotional suppression and fighting spirit.
- J Psychosomatic Research. 2003 Nov;55(5):461-7.
The more positive the relationship between doctor and patient the better the treatment adherence. Patient distress negatively impacts family and doctor patient relationship.
- Han WT, Collie K, Koopman C, Azarow J, Classen C, Morrow GR, Michel B, Brennan-O'Neill E, Spiegel D., Breast cancer and problems with medical interactions: relationships with traumatic stress, emotional self-efficacy, and social support.
- Psychooncology. 2005 Apr;14(4):318-30.
- Loscalzo, M.J. and J.R. Zabora, Care of the cancer patient: response of family and staff., in Topics in palliative care, E. Bruera and R.K. Portenoy, Editors. 1998, Oxford University Press: New York. p. v. <1-4 >
Psycho-educational programs lead to improved quality of life—information is support.
- Golant, M., Altman, T., Martin, C., Managing Cancer Side Effects to Improve Quality of Life: A Cancer Psychoeducation Program, Cancer Nursing, February 2003, vol.26, 1, pgs. 37-46.
- Daugherty, C., et al., Perceptions of cancer patients and their physicians involved in phase I trials, J Clin Oncol 1995 Sep;13(9):2476]. Journal of Clinical Oncology, 1995. 13(5): p. 1062-72.
- Houts, P.S., et al., The Prepared Family Caregiver: A Problem-solving Approach to Family Caregiver Education. Patient Education & Counseling, 1996. 27(1): 63-73.
- Nezu, A.M., et al., Relevance of problem-solving therapy to psychosocial oncology. Journal of Psychosocial Oncology, 1999. 16(3-4): p. 5-26.
TWC Program Philosophy founded upon the unique Patient Active Concept is valid. Research indicates that support groups benefit cancer patients.
- depression, anxiety (Kassane, 2004; Goodwin, 2001; Spiegel, Bloom, Yalom, 1981)
- trauma symptoms (Classen, in press)
- pain (Goodwin, 2001; Spiegel and Bloom,1983)
- coping responses (Spiegel, Bloom, Yalom, 1981)
- immune response (Fawzy, 1990)
- survival time (Spiegel et al., 1989)
Effective therapies typically encourage emotional expression within strong social support will improve the quality of their lives. We know that support groups improve the quality of life for patients—especially those most distressed. These findings are based only on professionally-led groups.
- Goodwin PJ, Ennis M, Bordeleau LJ, Pritchard KI, Trudeau ME, Koo J, Hood N., Health-related quality of life and psychosocial status in breast cancer prognosis: analysis of multiple variables. J Clinical Oncology. 2004 Oct 15;22(20):4184-92
- Kissane DW, Love A, Hatton A, Bloch S, Smith G, Clarke DM, Miach P, Ikin J, Ranieri N, Snyder, RD. Effect of cognitive-existential group therapy on survival in early-stage breast cancer. J Clinical Oncology. 2004 Nov 1;22(21):4255-60. Epub 2004 Sep 27.
- Spiegel D, Giese-Davis, JE Depression and cancer: mechanisms and disease progression.Biological Psychiatry. 2003 Aug 1;54(3):269-82. Review.
- Lieberman, M., Golant, M., Altman, T. Therapeutic Norms and Patient Benefit; Cancer Patients in Professionally Directed Support Groups Group Dynamic, Theory, Research and Practice, vol8 (4), 265-276)
- Goodwin PJ, Ennis M, Pritchard KI, Koo J, Trudeau ME, Hood N., Diet and breast cancer: evidence that extremes in diet are
- associated with poor survival. J Clin Oncol. 2003 Jul 1;21(13):2500-7
Stress Reduction Exercises—Mindfulness-based Stress Reduction, Hypnosis, & Guided Imagery consistently shows quality of life benefits in reduced depression, pain & fatigue.
- Carlson LE, Speca M, Patel KD, Goodey E. Mindfulness-based stress reduction in relation to quality of life, mood, symptoms of stress and levels of cortisol, dehydroepiandrosterone sulfate (DHEAS) and melatonin in breast and prostate cancer outpatients. Psychoneuroendocrinology. 2004 May;29(4):448-74.
- Antoni MH, Lehman JM, Kilbourn KM, Boyers AE, Culver JL, Alferi SM, Yount SE, McGregor BA, Arena PL, Harris SD, PriceAA, Carver CS.
Cognitive– behavioral stress management intervention decreases the prevalence of depression and enhances benefit finding among women under treatment for early-stage breast cancer.
- Health Psychol 2001;20:20– 32.
- Spiegel, D. and J. Bloom. (1983). Group therapy and hypnosis reduce metastatic breast carcinoma pain. Psychosomatic Medicine, 45: 333-339.
Results from a randomized clinical trial with Stanford University and CSC show CSC support group participants gain:
- Develop a new attitude towards the illness
- Make changes in their lives that they think are important
- Better partner with their physician
- Better access cancer information & resources
- *Giese-Davis, J. Golant, M., Kronenwetter, C., Sefton, S., Spiegel D., Do Cancer Support Groups Reduce Physiological Stress? (in submission Psychooncology)
Research in distress and cancer provides a resounding justification for CSC’s significance. CSC PA Concept is deeply rooted in well-established, substantive research that is as relevant today as it was in 1982 when we opened our doors. Every aspect of CSC program (whether groups, education, stress reduction, social events) has evidence to support its value for people affected by cancer. CSC uses our own research and the research of others to interpret what practices best integrate with our community-based model.