Lung transplant or bust: patients' recommendations for ideal lung transplant education.

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.