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.

Symptom burden and infection occurrence among individuals with extremity lymphedema.

Currently, there is a lack of data related to differences in symptoms and infection across different types and anatomical sites of lymphedema. The objective of this study was to examine differences in symptoms and infection status among individuals with lymphedema of the upper or lower extremities. The National Lymphedema Network initiated an online survey of self-report lymphedema data from March 2006 through January 2010. Descriptive statistics, Mann-Whitney tests, and Chi-square tests were used to analyze data. 723 individuals with upper extremity lymphedema and 1114 individuals with lower extremity lymphedema completed the survey. Individuals with extremity lymphedema experienced high symptom burden and infectious complications. Compared with individuals with upper extremity lymphedema, individuals with lower extremity lymphedema experienced more frequent and more severe symptoms (p<.001), infection episodes (p<.001), and infection-related hospitalizations (p<.001). No statistically significant differences of symptom burden and infection status were identified between individuals with lower extremity primary and secondary lymphedema. Individuals with extremity lymphedema experience substantial symptom burden and infectious complications; however, those with lower extremity lymphedema have more severe symptoms and more infections than those with upper extremity lymphedema.