Education about Lymphedema Prevention and Management: A Needs Assessment of Breast Cancer Survivors in a Rural U.S. State

Abstract

Breast cancer survivors who had received treatment at a tertiary hospital in the rural state of Vermont were interviewed to ascertain their sources of information and levels of awareness and practice relating to lymphedema prevention and management. The results generally corroborated those of previous research: surgeons, reading materials, and other breast cancer survivors were the three most cited sources of information. Awareness of recommended practices for preventing and managing lymphedema ranged from 21.4 percent to 71.4 percent and respondents tended to practice what little they knew. Higher levels of awareness and practice were associated with citing a primary care physician as an information source. The results suggest designing different interventions for providers and patients. It seems that providers need to be motivated to provide information to their patients at every opportunity, while patients would benefit from direct discussions with their primary care physicians about lymphedema prevention and management. A package of lymphedema education materials is being developed to facilitate community outreach.