Lung transplant or bust: Patients' recommendations for ideal lung transplant education

Lashara Davis, Eric Ryszkiewicz, Emily Schenk, John Peipert, Claire Lasee, Carol Miller, Greg Richardson, Gene Ridolfi, Elbert Trulock, G. Patterson, Amy Waterman

Research output: Contribution to journalArticlepeer-review

11 Scopus citations


Context-Effective lung transplant education helps ensure informed decision making by patients and better transplant outcomes.Objective-To understand the educational needs and experiences of lung transplant patients.Design-Mixed- method study employing focus groups and patient surveys.Setting-Barnes-Jewish Hospital in St Louis, Missouri.Patients-50 adult lung transplant patients: 23 pretransplant and 27 posttransplant.Main Outcome Measures-Patients' interest in receiving specific transplant information, the stage in the transplant process during which they wanted to receive the education, and the preferred format for presenting the information.Results-Patients most wanted information about how to sustain their transplant (72%), when to contact their coordinator immediately (56%), transplant benefits (56%), immunosuppressants (54%), and possible out-of-pocket expenses (52%). Patients also wanted comprehensive information early in the transplant process and a review of a subset of topics immediately before transplant (time between getting the call that a potential donor has been found and getting the transplant). Patients reported that they would use Internet resources (74%) and converse with transplant professionals (68%) and recipients (62%) most often.Discussion-Lung transplant patients are focused on learning how to get a transplant and ensuring its success afterwards. A comprehensive overview of the evaluation, surgery, and recovery process at evaluation onset with a review of content about medications, pain management, and transplant recovery repeated immediately before surgery is ideal.

Original languageEnglish
Pages (from-to)132-141
Number of pages10
JournalProgress in Transplantation
Issue number2
StatePublished - Jun 1 2014


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