The State of Patient-Centered Outcomes Research in Chronic Kidney Disease: Perspectives from Patients, Care Partners, and Researchers

Abstract

Patient-centered outcomes research (PCOR) requires that patients and care partners be active partners throughout the entire research process. Although PCOR methodologies in health research have increased, PCOR on chronic kidney disease (CKD) remains relatively low. This project aimed to better understand the state of PCOR on CKD from the perspectives of patients, care partners, and researchers. Two National Kidney Foundation (NKF) surveys were completed by 847 CKD patients and care partners and 647 CKD researchers. Results indicate that a small minority (7%) of patient and care partner respondents were involved with kidney disease research, and less than a third (27%) of responding researchers indicated that they had involved patients and care partners in their research projects within the last five years. Despite relatively low numbers of PCOR projects on CKD, patients and care partner respondents are eager to participate in research and, likewise, CKD researchers are interested in doing PCOR. Implications include increasing PCOR on CKD and utilizing nephrology social workers to facilitate connections among CKD patients, care partners, and researchers.