Coping Mechanisms for Lymphedema: An Analysis of Patient Experiences

Background and objective Lymphedema is a condition caused by impaired lymphatic function. Acquired lymphedema is often due to neoplasia, infection, trauma, or radiation damage. Most patients rely on advice from fellow patients and personal research to manage their symptoms. We believe coping mechanisms for lymphedema can be more streamlined and made easily accessible if the most common effective strategies are determined and collected in a single repository for reference. To that end, we aimed to assess the experiences of lymphedema patients and the coping mechanisms they employed. Methods Feedback from lymphedema patients was obtained using a 19-item questionnaire-based survey distributed to multiple online lymphedema support groups. It focused on the type of lymphedema and its effect on the respondents and sought data to characterize coping mechanisms that individuals with lymphedema use and their effectiveness. Results The respondents (n=400) had a median age of 55 years (range: 18-83 years). The overall mean BMI was 35.8 kg/m², with respondents with lower extremity (LE) lymphedema having a greater mean BMI (38.4 vs. 31.0, p<0.05). Most of the respondents were female (n=382, 95.5%). LE lymphedema was more common (n=280, 70%) than the upper extremity (UE) variant (n=120, 30%). Within the LE group, 99 were unilateral (35.4%) and 181 were bilateral (64.6%). Moderate restriction was the most reported level with 44% in the unilateral group and 64% in the bilateral group. Stretching, low-impact exercise, manual lymphatic drainage (MLD), and compression bandages were the most commonly used coping methods and most of the respondents rated them as somewhat effective. Of note, 30% of respondents in either group rated increased water intake as either slightly, moderately, or very helpful; 25% of respondents also rated decreased alcohol intake as very helpful. The use of a therapist and family and doctor support was rated as extremely helpful. Within the UE group, 105 were unilateral (87.5%) and 15 were bilateral (12.5%). The most common cause of UE lymphedema was breast cancer-related (98/120, 81.7%) followed by melanoma treatment. Mild restriction was the most reported level (n=48, 45.7%). The UE group had similar results as the LE group in terms of coping mechanisms, dietary changes, and psychosocial support. Conclusion Based on the experiences of the lymphedema patients surveyed, the management of the condition is multifactorial and hence not compatible with a one-size-fits-all strategy. LE lymphedema was more common than the UE variant; but both groups reported engaging in stretching, low-impact exercise, manual lymphatic drainage, and compression bandages with similar rates of satisfaction reported in both groups. Dietary changes were not commonly employed. Therapy, doctor, and family support were the most commonly used support mechanisms, with high satisfaction among both groups. The overall coping mechanisms and their ratings in terms of efficacy between UE and LE groups were similar although the impact of quality of life was greater for bilateral conditions. We believe our findings represent the first steps to providing information potentially useful to aid future and current lymphedema patients in finding the coping methods that work best for them.