Importance of Patient-Reported Outcome Measures on Clinical Practice in Patients With Kidney Disease

Abstract

recognition of the importance of patient-centered care in nephrology. A primary goal of patient-centered care is to elicit patients’ concerns and values with regard to their own health care and let these values guide clinical decisionmaking. Research on patients with kidney disease shows that they often prioritize symptoms and functionality over laboratory measurements and clinical guidelines, which nephrologists have traditionally used to direct clinical care. Prior research indicates that nephrologists often do not comprehensively address patients’ symptoms, in part due to clinicians underappreciating symptom severity and patients underreporting symptoms. Patient-reported outcome measures (PROMs) can be used in clinic to systematically assess patients’ concerns and quantify their experiences. PROMs can monitor disease progression, assess symptoms, track side effects, and evaluate psychological well-being. When compared to usual clinical care, PROM use in clinics can enhance symptom management and improve patients’ health-related quality of life (HRQOL). PROMs can also be used to incorporate the patient experience in medical research. The Food and Drug Administration (FDA) has advocated for PRO use in supporting medical product claims in clinical research. In particular, nephrotic syndrome has been highlighted by the FDA and National Kidney Foundation as a kidney disease that may be amenable to symptom assessments with PROMs, and they have called for the development of PRO endpoints for clinical trials assessing interventions for this syndrome. While there has been increased use of PROMs in the past decade, they are still underutilized in nephrology research and clinical care. Developing disease-specific PROMs that address patients’ concerns and reflect clinical changes may expand PROM use in nephrology, optimize evaluation of new treatments, and ultimately improve health care delivery. Focal segmental glomerulosclerosis (FSGS) and minimal change disease (MCD) are glomerular diseases that exist along one pathophysiologic spectrum. These diseases cause nephrotic syndrome, characterized by high levels of proteinuria and significant edema, and can lead to irreversible kidney damage. FSGS and MCD and their treatments can cause significant physical and psychological morbidity. Clinicians often use levels of proteinuria and serum creatinine to monitor disease status, but this approach fails to