2880 American Cancer Society Lymphedema Workshop Supplement to Cancer Workgroup II Patient Education—Pre- and Posttreatment Carolyn D. Runowicz, M.D. (Co-Chair) Steven D. Passik, Ph.D. (Co-Chair) Danette Hann, Ph.D.* (Rapporteur) Anthony Berson, M.D.* Helena Chang, M.D., Ph.D.* Kay Makar, R.D., M.P.H.* Roberta Moss, M.P.H.* Janet Osuch, M.D.* Jeanne D. Petrek, M.D.* Anne-Marie Vaillant-Newman, P.T.* The workgroup affirmed the importance of pre- and posttreatment education about lymphedema for women who are treated for breast cancer. There is anecdotal evidence that many breast cancer patients who have developed lymphedema were unaware of the risk, symptoms, and potentially protective measures. Pre- and posttreatment education is important because early signs of lymphedema may not be noticed, or the significance may not be appreciated, leading to delays in initiation of treatment and potentially avoidable progression. Further, as treatment advances offer the potential to reduce the risk of lymphedema, breast cancer patients should have the opportunity to make informed decisions about treatment regimens when options exist. The workgroup reached the following conclusions and recommendations: I. PRETREATMENT PATIENT EDUCATION A. Pretreatment education should be accurate and evidence based; B. Pretreatment education interventions should be aimed at awareness about the risks of lymphedema and set the stage for posttreatment education. Posttreatment education should focus on prevention and symptom awareness. There should be information, verbal and written, available to patients and the caregiver spouse/family member about the risks, consequences, prevention, and management of lymphedema; C. There is a need for reliable and accessible information resources, such as the American Cancer Society, National Cancer Institute, and others, to provide educational information in various forms (electronic, print, etc.) about lymphedema to patients; D. Education interventions should be appropriate to the medical setting and culturally sensitive to the target population; E. Patients should be encouraged to obtain treatment from surgeons and radiation therapists most experienced in breast cancer treatment and thereby aware of treatment-related lymphedema. II. Posttreatment Patient Education *Workgroup participant. Presented at the American Cancer Society Lymphedema Workshop, New York, New York, February 20 –22, 1998. Address for reprints: Robert A. Smith, Ph.D., American Cancer Society, Inc., 1599 Clifton Rd. NE, Atlanta, GA 30329. Received October 26, 1998; accepted October 28, 1998. © 1998 American Cancer Society A. Post-treatment education should include information about factors associated with the development of lymphedema. Educational intervention should include a definition and explanation of lymphedema, and the reasons for various hand and arm precautions which should be described in terms of evidence-based importance. The education intervention should be formulated in a positive manner so that the patient’s sense of control is enhanced. B. Patients should be given practical advice on how to avoid situations associated with increased risk of lymphedema, and what to do if these circumstances are encountered (i.e., what to do if the Workgroup II/Runowicz et al. C. D. E. F. skin is broken on the affected arm). Instruction should also be given on how to recognize early signs of lymphedema; Patients should be reassured that lymphedema is not associated with breast cancer recurrence. Patients and providers should be encouraged to adopt a practical, common sense approach towards recommendations for avoiding lymphedema, especially since forbidden and encouraged activities are not always evidence-based. Providers also should acknowledge the fact that some messages are conflicting, i.e., “Do not exercise, but lose weight.” Patients should be informed that these recommendations for risk reduction often are based on anecdotes, but are physiologically consistent, and, where conflicts exists patients should try and find a common ground until better evidence is available. Educational interventions should include spouse/ family or caregiver; Educational interventions should address psychosocial aspects of lymphedema (i.e., self-blame, emotional distress) and also should be culturally sensitive. III. Education Interventions for Patients who Develop Lymphedema A. Patients should be encouraged to have a comprehensive evaluation by professionals who are experienced in treating lymphedema; B. Patients should have access to educational materials that provide information on available treatment modalities and the evidence for their efficacy, as well as lists of resources (treatment centers, support groups); C. Patients should be educated as to realistic goals for management of lymphedema and given specialized training in lymphedema prevention; D. Patients should be educated about acute management of lymphedema, as well as need for selfmaintenance of the stable, but chronic form of lymphedema. 2881 IV. Recommendations for Research and Funding A. There is a need to develop pretreatment counseling and educational strategies, and to evaluate their efficacy based on (a) retention of information over subsequent periods of time; and (b) patient satisfaction, i.e., confidence about decisions and practices related to quality of life, etc. The evaluation of risk associated with discouraged posttreatment exposures (i.e., vein puncture in the at-risk arm) could be effectively studied in women who have had bilateral mastectomy and thus have no practical alternative. B. Posttreatment educational strategies need to be developed and evaluated in terms of efficacy of (a) avoidance of risk-related behavior; (b) early recognition of symptoms; (c) prompt care-seeking behavior; and (d) the impact of posttreatment patient education on patients’ physical and psychosocial outcomes. C. There is a critical need for a better understanding of the natural course of this disease, and therefore registries should be developed to follow patients in order to gather information about the risk, onset, and characteristics of post-treatment lymphedema. D. Breast cancer patients and their providers need guidelines to assess the quality of available interventions and treatment centers. E. There is a need for a comprehensive literature review of European studies of the various treatment modalities. F. An available and cost-effective opportunity for prospective research on lymphedema exists in current breast cancer treatment studies. The workgroup recommended that a lymphedema surveillance component should be added to prospective clinical trials now beginning—e.g., chemotherapy trials, as a method of encouraging relatively inexpensive, but potentially lengthy lymphedema studies.