A Need for Realistic Expectation Setting in Post-Transplant Patient Education

Background: Transplant is the best treatment option for kidney failure, but often comes with a vast lifestyle change, new medications, and risk for complications. Education on post-transplant life is essential to adequately prepare patients/caregivers for this change and mitigate complications. To better understand gaps in education on post-transplant living, the American Kidney Fund (AKF) conducted qualitative research with both patients/caregivers and transplant health care providers (HCPs). Methods: AKF facilitated 16, 60-minute in-depth interviews (IDI) with 11 HCPs and 6 transplant recipients/caregivers. IDI interview guides included 7 (patient/caregivers) and 8 (HCP) open-ended questions to elicit both clinical and lived experiences during the post-transplant period (focusing on the first-year post-transplant) related to clinical care, lifestyle adjustments, education, and resources. IDIs were recorded, transcribed, and analyzed using an inductive approach with coding done in NVivo. Themes were indicated by frequency of mentions (FM). Results: Interviewees discussed patient complications (FM=283) in detail: more specifically, sharing on a variety of mental health challenges (FM=111), the most common ones including fear (FM=20), anxiety (FM=11), guilt (FM=9), and depression (FM=7). Multiple interviewees attributed these overwhelming feelings to a lack of adequate expectation setting. When discussing post-transplant education, both patients/caregivers and HCPs mentioned expectations of post-transplant. Interviewees indicated they/their patients “expected to feel good/normal post-transplant” (FM=20) and patients/caregivers cited “needing more realistic expectations” (FM=9) prior to transplant. HCPs noted they attempt to “balance communicating the pros and cons” (FM=9) prior to transplant, but there are “areas for potential improvement” (FM=6) within patient-provider communications. Conclusion: Prior to transplant, patients focus on the transplant itself as the possibility of an improved quality of life. Throughout these conversations on post-transplant living, interviewees shared the stark, unexpected physical and emotional challenges they/their patients experienced, often leaving them disappointed. These insights highlight the need to elucidate complications during pre-transplant education and provide realistic expectations of post-transplant living. Funding: Commercial Support - CareDx, Boehringer Ingelheim/Lilly, Vertex, AstraZeneca, Merck, Otsuka, Sanofi, Travere Therapeutics