Lung Transplant or Bust: Patients' Recommendations for Ideal Lung Transplant Education

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.