An Enhanced Self-Care Protocol for People Affected by Moderate to Severe Lymphedema.

Douglass J, Mableson HE, Martindale S, Kelly-Hope LA

Lymphedema is a chronic skin disease that has many causes and leads to significant disfigurement and disability worldwide. Recommendations for lymphedema self-care vary by setting and the World Health Organization guidelines for people affected by lymphatic filariasis- and podoconiosis-related lymphedema are centered around a basic daily hygiene regimen. Research on cancer-related lymphedema in developed country settings suggests that deep-breathing exercises and self-massage can improve lymphedema status, but these exercises are not routinely taught to people affected by lymphedema in developing country settings. To determine if the activities proven in cancer-related lymphedema can improve outcomes for people affected by lymphatic filariasis- or podoconiosis-related lymphedema, an enhanced self-care protocol for lower limb lymphedema was developed and trialed in Nilphamari District in Bangladesh and Simada Woreda in Ethiopia. Enhanced self-care activities were chosen on the basis that they would not add financial burden to patients or their families and included recommendations to perform deep-breathing exercises and self-massage, drink clean water, and eat fresh fruits and vegetables. The enhanced-care protocol was developed in collaboration with implementing partners in both countries and may be applicable in other populations affected by lower-limb lymphedema. Trial methods and results will be submitted for peer reviewed publication. Current recommendations for lymphedema self-care may be less effective for people with more advanced disease and new or cross-cutting methods are needed to improve outcomes for these populations.