title: Using Patient-Reported Outcome Measures to Capture the Patient's Voice in Research and Care of Juvenile Idiopathic Arthritis.
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.
authors.affiliation: Pediatric Rheumatology, University of Utah, 81 Mario Capecchi Way, 4th Floor, Salt Lake City, UT 84113, USA. Electronic address: aimee.hersh@hsc.utah.edu.
authors.forename: Aimee O
authors.initials: AO
authors.lastname: Hersh
authors.affiliation: Division of Developmental Medicine, Boston Children's Hospital, 300 Longwood Avenue BCH3185, Boston, MA 02115, USA.
authors.forename: Parissa K
authors.initials: PK
authors.lastname: Salimian
authors.affiliation: Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, 300 Longwood Avenue BCH3187, Boston, MA 02115, USA; Department of Pediatrics, Harvard Medical School, 300 Longwood Avenue BCH3187, Boston, MA 02115, USA; Computational Health Informatics Program, Boston Children's Hospital, 300 Longwood Avenue BCH3187, Boston, MA 02115, USA.
authors.forename: Elissa R
authors.initials: ER
authors.lastname: Weitzman
mesh_terms: D000203:Activities of Daily Living; D018501:Antirheumatic Agents / Q000009:adverse effects; D018771:Arthralgia / Q000209:etiology / Q000503:physiopathology*; D001171:Arthritis, Juvenile / Q000150:complications / Q000188:drug therapy / Q000503:physiopathology*; D035843:Biomedical Research; D006801:Humans; D000071066:Patient Reported Outcome Measures; D018802:Patient-Centered Care; D011788:Quality of Life; D016896:Treatment Outcome
chemical_list: D018501:Antirheumatic Agents
keywords: Chronic disease; Comparative effectiveness research; Health outcomes; Juvenile arthritis; Patient-centered care; Pediatric rheumatology; Quality of life; Self-report