"What I Wish I Would Have Known": Patient Impressions of Transplant Education

Document Type

Conference Proceeding

Publication Date


Publication Title

Am J Transplant


Purpose: Personal health management remains a key component to adherence after transplantation. The purpose of this study was to identify potential gaps m transplant education. We conducted a survey of transplant recipients and support persons regarding "What they wish they would have known" about transplant. We hypothesized that there would be disparity of transplant understanding among dif-ferent education levels and age groups. Methods: The survey was disseminated through stakeholder groups. Respondents included transplant recipients. people awaiting transplant, and support persons. The survey was designed to identify gaps in pre transplant education. lt consisted of forced choice phrases. where respondents were asked to select items that described things they "wish they would have known" about transplant. Phrases contained basic transplant knowledge points centered on the following themes: medications, infection, daily living with a chronic medical condition, and logistics. Phrases that were selected were interpreted to signify a potential gap in education. Respondents also had the option to submit an alternate, free-text answer in each category. Results: There were 236 respondents from 15 states. 60. 6% of respondents were transplant recipients (72% abdominal; 28% thoracic). 28. 4% of the respondents identified as support person (caregiver, family member or friend). Of 227 respon-dents with age reported, 51. 5% were >55, the remainder were 18-55. Age groups responded similarly to 65 of the 75 forced choice phrases. Of 229 respondents with highest degree of education reported, 56. 8% completed a bachelor's degree or higher. Education groups responded similarly to 69 of the 75 forced choice phrases A sampling of the results is summarized in Fig 1. Conclusions: Post transplant, patients must make lifestyle adjustments to success-fully maintain their graft and overall health. Comprehensive pre transplant education is critical for informed consent and appropriate adherence. This survey identified potential gaps in education. There were few areas where education or age significantly influenced education understanding. Further exploration of these gaps is needed m order to create successful approaches to pre transplant education.



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