Purpose: The primary purpose of this study was to cross-sectionally examine breast cancer treatment-related lymphedema self-care education, self-care practices, and perceived self-care barriers, burdens, and benefits. We also explored the associations among self-care education, practices, symptoms, and quality of life (QOL) in breast cancer survivors with known lymphedema.
Methods: A cross-sectional design was used to obtain data about lymphedema self-care education, self-care practices, perceived self-care barriers, burdens, and benefits, symptoms, and QOL. Frequency distributions and Spearman rank-order correlations were used to analyze quantitative data. Thematic qualitative analysis of perceived barriers, benefits, and burdens of self-care was also undertaken.
Results: Surveys were completed and returned by 51 of 58 eligible individuals. Of the 51 responding, 48 had received some self-care education, but three did not think it was adequate. Wearing a compression garment was the most frequently cited self-care activity, and 18 of the 51 required help with self-care. Thirty-three percent, 17/51, spent 15 minutes or less per day on self-care. Multiple barriers to self-care were identified. Those with more symptoms spent more time on self-care activities and had a poorer QOL.
Conclusions: Opportunities exist to improve lymphedema self-care education. Breast cancer survivors with lymphedema experience symptoms beyond that of simple swelling of the affected limb. Self-care is burdensome. Barriers to providing lymphedema self-care exist and may vary across patients. A multidisciplinary approach to lymphedema management, including self-care education and monitoring, is likely needed to improve QOL in this population.