COLUMBIA, Mo. Lymphedema, a chronic swelling condition that can appear after breast cancer surgery, is a risk for 1.3 million breast cancer survivors. Although lymphedema can cause lifelong swelling in the arms, back, neck and chest, there is no national standard of diagnosis or care. Now, University of Missouri researchers are leading the American Lymphedema Framework Project (ALFP), a national, multi-disciplinary collaboration to develop comprehensive guidelines for the assessment, treatment, and management of lymphedema.
"We can't cure lymphedema today we can only manage it," said Jane Armer, MU nursing professor and director of the project at the MU Ellis Fischel Cancer Center. "Lymphedema is a complex, chronic condition. Currently, there are inconsistent approaches to care for lymphedema, and often the most common form of self-management is to not treat it at all."
The ALFP, established in 2008, has two main goals: establish a best practices document with evidence-based lymphedema treatment guidelines for health practitioners, and create a minimum data set of all available lymphedema research and clinical data. The ALFP researchers plan to publish the best practices document in 2011.
"Part of why there isn't a standard of care is the lack of reliance on current evidence by health practitioners and third party payers, which in turn causes problems with reimbursement from health insurance companies. Many people with lymphedema have to pay out-of-pocket for care," Armer said. "There isn't a clear, national consensus for how to diagnose lymphedema and when to start treating it. The ALFP collaborators aim to document a standard of care reflecting a consensus on best practices that will help solve these problems."
Researchers, including those at MU, have found that the most effective method of care for lymphedema is complete decongestive physiotherapy, in which therapists use specialized lymphatic massage techniques t
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University of Missouri-Columbia