Beyond theory and into practice: A qualitative study of the experiences of xenotransplant recipients

Abstract

With the US Food and Drug Administration clearance of clinical trials of kidney xenotransplantation (XTx) in living humans, understanding the recipient experience is critical. Semistructured interviews with the 3 living XTx recipients identified core domains of the recipient's experience, including quality of life (QoL), fears about XTx, and health care team communication and support. Transcribed interviews were analyzed by 2 qualitative researchers using an inductive thematic approach and were mapped onto the Warwick Patient Experience Model, a validated framework to assess key aspects of patient satisfaction with the health care experience. All 3 recipients (a 53-year-old female, a 66-year-old male, and a 54-year-old male) described a restoration of hope, contrasted with their poor QoL on dialysis. They emphasized that access to XTx and graft survival requires confidence and commitment between recipients and health care teams. XTx recipients use dialysis as a point of reference when describing changes in their posttransplant QoL and seem well-situated to handle the possibility of graft failure. These insights may aid in the creation of decision aids and educational materials tailored to the specific needs of XTx recipients.

Keywords: domains of experience; patient experience; qualitative research; quality of life; xenotransplantation.