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

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.

Key points

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Incorporating patient-reported outcome (PRO) measures into routine clinical care of patients with juvenile idiopathic arthritis can help facilitate movement from physician-centered to patient-centered care.
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PRO measures relevant to juvenile idiopathic arthritis provide information germane to evaluating treatment outcomes and comparative effectiveness of therapies.
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Valid and reliable PRO measures are available that capture the experience of juvenile idiopathic arthritis from the perspective of patients and parents.
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Length, age, potential discordance between parent and child responses, and clinical validity are among the issues that need to be considered when selecting PRO measures.