2886 American Cancer Society Lymphedema Workshop Supplement to Cancer Workgroup IV Lymphedema Treatment Resources—Professional Education and Availability of Patient Services Darlene R. Walley, Ph.D. (Co-Chair) Elizabeth Augustine, M.S., P.T. (Co-Chair) Debbie Saslow, Ph.D. (Rapporteur) Sherry Bailey* Eunice Jeffs, R.N.* Bonnie Lasinski, M.A., P.T.* JoAnn Plotkin* Maye Walker* Although estimates vary on both the incidence and prevalence of lymphedema related to breast carcinoma treatment, even at the lowest estimate it is a serious public health problem. Lymphedema is a barrier to recovery and rehabilitation from breast carcinoma treatment for a significant number of women today, and will be for a significant number of women who will develop this disease. A common theme heard at the Public Forum that preceded the American Cancer Society Lymphedema Workshop was that health care providers are poorly informed about this disease and therefore commonly do not recognize early symptoms. Providers are also poorly informed about the range of treatment options, which treatment may be most appropriate for the patient, and the availability of treatment in their community. Even if a patient’s physician is responsive to signs and symptoms, often they face the vexing challenge of identifying appropriate resources in the community. This workgroup concluded that there was a critical need to provide guidance about lymphedema to health care providers, insurers, and breast carcinoma survivors, especially regarding its early signs and symptoms. There is also a critical need to increase the availability of treatment resources. I. GUIDANCE A. Currently, little emphasis is placed on awareness, recognition, or treatment of lymphedema among physicians (gatekeepers), allied health professionals, and insurers. Recommendation * 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 The American Cancer Society and other appropriate organizations should write an impact statement to disseminate to health care professional organizations, requesting that they each develop clinical practice guidelines that focus on education and recognition of lymphedema that occurs after breast carcinoma treatment. The guidelines will need to cover different treatment needs as well as recognition of lymphedema as a disease (rather than a condition or symptom). B. Lymphedema is not a priority within the curricula of medical professionals. Recommendation Lymphedema case studies should be included in grand rounds, continuing medical education courses, and graduate medical education. Research is needed to determine the best format and content for how to educate health professionals. Cancer-related lymphedema should be incorporated into differential edema diagnosis, e.g., cardiac, ve- Workgroup IV/Walley et al. nous, etc. The different educational needs of physicians and physical therapists must be addressed. C. There is insufficient access to good educational materials and textbooks published in English. Recommendation Suppliers and authors of medical texts published in English should be contacted about the need for professional education about lymphedema. In addition, efforts should focus on the inclusion of these materials in graduate medical education and their availability in bookstores. D. There are no guidelines or certification to assure that specific treatments or treatment facilities meet state-ofthe-art criteria. It is unclear which body should be responsible for certification. Recommendation A multidisciplinary task force should be assembled to establish certification guidelines and determine how they should be implemented and enforced in a way that conforms to a current American system, e.g., JCHO. In the short term, the basic questions patients could ask to compare the qualifications of alternative treatments or treatment settings should be made more widely available. E. Patients and their physicians generally do not know where to obtain treatment or how to assess the quality of available treatment resources. At this time, the number of treatment centers is inadequate, and the availability of treatment is limited by geography. Recommendation The American Cancer Society and other appropriate organizations should issue and widely disseminate a complete lymphedema resource guide. The proliferation of treatment centers based on involvement of an accreditation group and consensus diagnosis/management guidelines should be encouraged. Independent breast carcinoma care and women’s health care centers should be certified for lymphedema treatment to ensure that patients have access to comprehensive care. F. There is a need for management strategies, based on severity and cost-effectiveness, for patients who present with signs or symptoms of lymphedema. Recommendation All health care providers should be fully informed of the risk of lymphedema, basic preventive measures, and signs and symptoms of lymphedema, including subjective perceptions consistent with this disease. 2887 Patients presenting with mild lymphedema should be referred to health care professionals who have been trained to administer treatment (e.g., physical therapists), whereas the most severe cases of lymphedema should be referred to health care professionals who have received postprofessional specialized training in lymphedema management (e.g., physical therapists, occupational therapists, nurses, and physicians). II. COST/ECONOMIC ANALYSIS A. Currently, the workshop is unaware of cost/economic analyses of the burden of lymphedema. The absence of these data may contribute to the low priority that lymphedema is given by insurers. Recommendation There is a need for investigations and analyses to quantify the costs of treating lymphedema patients. The workshop believes that these costs will likely be substantial and may prove persuasive to policymakers. III. OVERALL PATIENT INTERVENTION STRATEGY A. There is no consistent guideline regarding when to interact with patients, including prior to or subsequent to breast carcinoma treatment. The workshop affirmed the importance of patient education regarding the risk of lymphedema, post– breast carcinoma treatment behaviors associated with risk and risk reduction, and recognition of early signs and symptoms. Recommendation All patients should be provided with information about lymphedema prior to and after breast carcinoma surgery, including reconstruction. Psychosocial research related to communication of posttreatment risk and living with posttreatment risk is needed, as are data on the incidence of lymphedema following different treatment regimens. B. Currently, there are no standard intervention strategies for patients with lymphedema and no common goal for treatment outcome, i.e., reduction of symptoms, quality of life, etc. This absence of objective criteria and shared outcome goals is believed to be a factor in poor compliance with treatment regimens and lack of understanding by patients. Recommendation The American Cancer Society and other appropriate organizations need to develop an overall intervention strategy, including the involvement of patient support systems. Research is needed that compares costs, efficacy, compliance, and quality of life associated with different intervention strategies.