Using Patient-Reported Outcome Measures to Capture the Patient's Voice in Research and Care of Juvenile Idiopathic Arthritis

Rheum Dis Clin North Am. 2016 May;42(2):333-46. doi: 10.1016/j.rdc.2016.01.004. Epub 2016 Mar 18.

Abstract

Patient-reported outcome (PRO) measures provide a valuable window into how patients with juvenile idiopathic arthritis and their parents perceive their functioning, quality of life, and medication side effects in the context of their disease and treatment. Momentum behind adoption of PRO measures is increasing as these patient-relevant tools capture information pertinent to taking a patient-centered approach to health care and research. This article reviews the clinical and research utility of obtaining PROs across domains applicable to the experience of juvenile idiopathic arthritis and summarizes available self-report and parent-proxy PRO measures. Current challenges and limitations of PRO usage are discussed.

Keywords: Chronic disease; Comparative effectiveness research; Health outcomes; Juvenile arthritis; Patient-centered care; Pediatric rheumatology; Quality of life; Self-report.

Publication types

  • Review
  • Research Support, N.I.H., Extramural

MeSH terms

  • Activities of Daily Living*
  • Antirheumatic Agents / adverse effects
  • Arthralgia / etiology
  • Arthralgia / physiopathology*
  • Arthritis, Juvenile / complications
  • Arthritis, Juvenile / drug therapy
  • Arthritis, Juvenile / physiopathology*
  • Biomedical Research*
  • Humans
  • Patient Reported Outcome Measures*
  • Patient-Centered Care
  • Quality of Life*
  • Treatment Outcome

Substances

  • Antirheumatic Agents