A Quantitative Analysis of Lymphedema Patient Perceptions and Subjective Outcomes Within the Healthcare System

Introduction, Objectives, and/or Purpose: 1. Validate and quantitate lymphedema patient interactions and dissatisfaction with the medical system.
2. investigate the potentiation of lymphedema-associated physical and psychosocial distress on the basis of inadequate care.
3. Identify areas of needed research and reform to optimize lymphatic health education and delivery within the U.S. medical system.

Methods: This study was designed to characterize the clinical characteristics and interactions of lymphedema patients within the American healthcare system. A cross-sectional design was implemented. A 23-item, unbiased online questionnaire was anonymously distributed to self-identified lymphedema patients utilizing social media and organizational platforms. Data were collected regarding clinical characteristics, healthcare experiences and patient satisfaction with care. Descriptive statistics were performed with SAS software.

Results: The questionnaire was completed by 1739 patient participants. More than half of the respondents had cancer-related lymphedema (CRL, 52.4%). The impact of lymphedema on quality of life was greater in participants with non-CRL than with CRL (P < 0.05). Both non-CRL and CRL respondents reported similar levels of physician disinterest in their lymphedema; however, non-CRL patients reported more dissatisfaction with their lymphedema diagnosis and treatment (P < 0.05). Participants experienced substantial delays in diagnosis and treatment, with 45.9% of CRL and 81.3% of non-CRL patients requiring consultation with more than one physician prior to diagnosis (P < 0.05).

Conclusion(s): Lymphedema has a substantial impact upon patient well-being. Despite this impact, patients continue to face delays in diagnosis and treatment, and remain dissatisfied with their current lymphatic healthcare. This is the first formal attempt to validate and quantitate levels of dissatisfaction within the patient community. Research and reform are needed to optimize lymphatic healthcare education and delivery within the U.S. medical system.