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“What I Wish I Would Have Known….” Patient Impressions of Transplant Education

K. Collins1, A. Yaldo1, E. Rubinstein1, K. Kippen2, H. Olden2, S. Nagai1, M. Abouljoud1

1Henry Ford Transplant Institute, Detroit, MI, 2Henry Ford, Detroit, MI

Meeting: 2019 American Transplant Congress

Abstract number: D307

Keywords: Patient education, Quality of life

Session Information

Date: Tuesday, June 4, 2019

Session Name: Poster Session D: Psychosocial and Treatment Adherence

Session Time: 6:00pm-7:00pm

 Presentation Time: 6:00pm-7:00pm

Location: Hall C & D

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*Purpose: Personal health management remains a key component to adherence after transplantation. The purpose of this study was to identify potential gaps in 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 different 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.It 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 respondents 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 successfully 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 in order to create successful approaches to pre transplant education.

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To cite this abstract in AMA style:

Collins K, Yaldo A, Rubinstein E, Kippen K, Olden H, Nagai S, Abouljoud M. “What I Wish I Would Have Known….” Patient Impressions of Transplant Education [abstract]. Am J Transplant. 2019; 19 (suppl 3). https://atcmeetingabstracts.com/abstract/what-i-wish-i-would-have-known-patient-impressions-of-transplant-education/. Accessed April 23, 2021.

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