SELF-REPORTED INFORMATION SOURCES AND PERCEIVED KNOWLEDGE IN INDIVIDUALS WITH LYMPHEDEMA

J Deng, MR Fu, JM Armer, JN Cormier, E Radina, SRJ Thiadens, MS Dietrich, J Weiss, CM Tuppo, SH Ridner

Abstract


Currently, a limited number of studieshave been conducted that examine sourcesof information and knowledge level in individualswith lymphedema. This study aimed 1)to examine self-reported information sourcesand perceived lymphedema knowledge amongindividuals with lymphedema; and 2) toexamine differences in self-reported informationsources and perceived lymphedemaknowledge among individuals with primary orsecondary lymphedema; and with upper orlower extremity lymphedema. The NationalLymphedema Network (NLN) conducted asurvey to collect self-report data from March2006 to January 2010. Overall, participantspreferred a variety of sources of information.Participants reported low levels of knowledgeabout the types of lymphedema, treatmentapproaches and methods, and self-administratedtherapies. In comparison to participantswith secondary or upper extremity lymphedema,participants with primary or lowerextremity lymphedema reported lower knowledgelevel regarding causes of lymphedema,risks for and complications of lymphedema,treatment approaches and methods for lymphedema, and self-administered therapies.Opportunities exist to expand lymphedemainformation sources. Healthcare professionalsshould focus on delivering high qualityinformation about treatment and self-caremanagement to individuals with lymphedema.

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