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

  • Author(s): Davis, L
  • Ryszkiewicz, E
  • Schenk, E
  • Peipert, J
  • Lasee, C
  • Miller, C
  • Richardson, G
  • Ridolfi, G
  • Trulock, E
  • Patterson, G
  • Waterman, A
  • et al.
Abstract

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. © 2014 NATCO.

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