Self-reported information sources and perceived knowledge in individuals with lymphedema

Currently, a limited number of studies have been conducted that examine sources of information and knowledge level in individuals with lymphedema. This study aimed 1) to examine self-reported information sources and perceived lymphedema knowledge among individuals with lymphedema; and 2) to examine differences in self-reported information sources and perceived lymphedema knowledge among individuals with primary or secondary lymphedema; and with upper or lower extremity lymphedema. The National Lymphedema Network (NLN) conducted a survey to collect self-report data from March 2006 to January 2010. Overall, participants preferred a variety of sources of information. Participants reported low levels of knowledge about the types of lymphedema, treatment approaches and methods, and self-administrated therapies. In comparison to participants with secondary or upper extremity lymphedema, participants with primary or lower extremity lymphedema reported lower knowledge level regarding causes of lymphedema, risks for and complications of lymphedema, treatment approaches and methods for lymphedema, and self-administered therapies. Opportunities exist to expand lymphedema information sources. Healthcare professionals should focus on delivering high quality information about treatment and self-care management to individuals with lymphedema.