What do lymphedema patients expect from a treatment and what do they achieve? A descriptive study

Lymphedema is characterized by swelling and fibroadipose tissue deposition that is a physically, psychologically, and socially debilitating condition due to chronic and progressive nature of the disease. Treatment benefit evaluation from the patient's perspective is important for medical decision-making. The aim of this study is to investigate important treatment goals and benefits of treatment from the patients' perspective.

Eighty-one patients with lymphedema, lipoedema, or lipolymphoedema who are currenlty treated or who underwent previous treatment were included in the study. Socio-demographic data was recorded. Important goals and benefit from treatment were assessed with Patients Needs Questionnaire and Patient Benefit Questionnaire which are sub-questionnaires of Patient Benefit Index-Lymphedema.

The most important expectation and needed item was "To find a clear diagnosis and therapy" (n:59, 72%). The least important item for the lymphedema patients was "To feel more attractive" (n:9, 11%). Most beneficial effect of treatment was "To have no fear that the disease will become worse" (n:37, 45.7%). "To have fewer out of pocket treatment expenses" was rated as the least beneficial effect of treatment (n:24, 29.6%).

It is important to identify patients' needs and expectations. Patients should be referred for treatment according to their needs. The effectiveness of the treatment should be evaluated objectively. Patient education should be considered as a part of the effective treatment to teach patients how to control their lymphedema. A clear diagnosis and access to treatment should be ensured for lymphedema patients. Regulations for health insurance benefit coverage are needed to cover cost of compression garments.