Understanding What Patients and Families Living with Kidney Failure Want and Need to Know about Xenotransplantation: A Kidney Transplant Research Possibility

Background: Advances in xenotransplantation offer great promise for an alternative supply of organs to meet the needs of people with life-threatening illnesses like kidney failure. However, this kidney transplant possibility has not yet been tested in clinical trials with humans, only early testing. The American Society of Nephrology (ASN) Kidney Health Initiative (KHI) formed a project team to assess perspectives about xenotransplantation and identify information needed to help ensure that future first-in-human (FIH) clinical studies are patient-centered and reflect the perspectives of those most affected by the research. Methods: To understand what is most important for patients and families living with kidney failure to know about xenotransplantation and future clinical trials, the American Institutes of Research (AIR) conducted 39 virtual individual interviews with patients, care partners, and nephrologists between April 1, 2022 and May 14, 2022. We used qualitative thematic analysis to synthesize and cross-validate the data. Results: Patients, care partners, and nephrologists shared perceived benefits of xenotransplantation, including expanding the supply of organs available, reducing long waiting times, and improving quality of life. Perceived risks included organ rejection, infection, or other complications. Nephrologists identified potential risks associated with a lack of available data related to short-and long-term health outcomes and safety. All participants expressed a need for information about xenotransplantation that is transparent, accessible, and understandable for diverse audiences and recommended strategies to help prepare clinicians to have conversations with patients and families about future clinical trials. Conclusion: Breakthroughs in xenotransplantation offer great promise for addressing the critical organ donor shortage, particularly for those living with kidney failure. Our discussions with patients, care partners, and nephrologists underscore the need to prepare both clinicians and families for discussions about potential participation in a clinical trial for xenotransplantation.