Patient-Reported Outcome Measures for Adults With Kidney Disease: Current Measures, Ongoing Initiatives, and Future Opportunities for Incorporation Into Patient-Centered Kidney Care

Abstract

Tools that measure patients' experiences and perceptions of disease are increasingly being recognized as important components of a multidisciplinary personalized approach to care. These patient-reported outcome measures (PROMs) have the ability to provide clinicians, researchers, and policymakers with valuable insights into patients' symptoms and experiences that are unable to be ascertained by laboratory markers alone. If developed rigorously, studied systematically, and used judiciously, PROMs can effectively incorporate the patient voice into clinical care, clinical trials, and health care policy. PROMs have continued to gain attention and interest within the nephrology community, but key challenges and opportunities for their seamless uptake and integration remain. In this narrative overview, we provide nephrologists with a comprehensive list of existing PROMs developed for adults with kidney disease with information on their gaps and limitations; a rationale to support the continued incorporation of PROMs into nephrology clinical trials, clinical care, and health care policy; and a summary of ongoing initiatives and future opportunities to do so.

Keywords: Patient-reported outcomes (PROs); chronic kidney disease (CKD); clinical trial endpoints; end-stage kidney disease (ESKD); hemodialysis; patient voice; patient-centered care; patient-reported outcome measures (PROMs); personalized care; psychometrics; qualitative research; review; symptom management; transplantation.