Patient-reported Outcome Measures in Solid Organ Transplant Recipients: Current use, Challenges, and Recommendations for Future use

Abstract

Worldwide, the number of patients receiving solid organ transplantation each year is increasing. In recent years, there has been growing recognition of the need to understand how these additional life years are experienced and valued by recipients. Patient-reported outcomes (PROs)—such as symptoms, functioning, and health-related quality of life—provide direct insight into health from the patient’s perspective and are increasingly acknowledged as key outcomes in both research and clinical care. Different patient-reported outcome measures (PROMs) have been developed in the field of transplantation. However, their current use in both clinical care and research in solid organ transplant recipients remains inconsistent and limited. This narrative review summarizes the current state of PRO and PROM use in solid organ transplantation across different organs and settings, highlights recent initiatives and ongoing implementation efforts, and outlines challenges in PROM selection, application and interpretation. Although the field of kidney transplantation is currently leading in the development and implementation of PROM initiatives, comparable efforts in liver, lung, and heart transplantation remain limited, resulting in slow and heterogeneous progress across organ domains. To support broader adoption, we propose a stepwise roadmap for PROM implementation in transplantation. A more systematic and thoughtful integration of PROs and PROMs holds potential to improve shared decision-making, generate evidence that aligns more closely with the priorities of transplant recipients, and ultimately support more meaningful clinical decisions and improved outcomes for transplant recipients.