The Use of Patient-Reported Outcomes in Patients Treated With Maintenance Hemodialysis: A Perspective

Abstract

There is increasing interest in the integration of patient-reported outcomes (PROs) into health care research and clinical practice for the benefit of patients with end-stage kidney disease receiving hemodialysis. In a research setting, PROs can be used as a patient-centered primary or secondary outcome in clinical studies. In routine care, PRO data may be used to support service delivery through benchmarking and audit or inform and enhance the care of the individual patient by improving patient-clinician communication. Despite evidence demonstrating the potential benefits of PROs and prioritization of these outcomes by patients, their use in kidney disease remains limited. Although there are significant methodological and operational challenges for the widespread integration of PROs, there is now consensus that this area should be at the forefront of clinical research and implementation science. We discuss the current use of PROs for patients with end-stage kidney disease receiving hemodialysis and identify a roadmap for increasing the evidence base and introducing PROs into mainstream clinical practice.

Keywords: Haemodialysis; PRO instrument; clinical trial; end stage renal disease (ESRD); haemodialysis research; health-related quality of life (HRQoL); patient-centered outcome; patient-reported outcome measures (PROMs); patient-reported outcomes (PROs); routine practice; shared decision-making; standardized outcome measure.