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Establishing an Updated Core Domain Set for Studies in Juvenile Idiopathic Arthritis: A Report from the OMERACT 2018
Esi M Morgan1,2, Jane E Munro3,4, Jennifer Horonjeff3,4
1From the Division of Rheumatology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, Ohio; Office of Research, Division of Rheumatology, Columbia University Medical Center, New York; Division of Rheumatology, University of Rochester, Golisano Children's Hospital, Rochester, New York; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland; Thornhill Associates, Hermosa Beach, California; Division of Rheumatology, Children's Mercy, Kansas City, Kansas City, Missouri; Division of Pediatric Rheumatology, Rutgers Robert Wood Johnson Medical School, Institute for Health, Health Care Policy and Aging Research, New Brunswick, New Jersey; University of Alabama at Birmingham, Birmingham, Alabama; Division of Rheumatology, Seattle Children's Hospital, Seattle, Washington; Patient Engagement, Arthritis Foundation, Atlanta, Georgia; University of Florida, Shands Children's Hospital, Gainesville, Florida; Division of Rheumatology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania; USA; Royal Children's Hospital; Murdoch Children's Research Institute Melbourne, Melbourne; Consumer and Community Health Research Network, Crawley, Australia; Ottawa Hospital Research Institute; School of Epidemiology and Public Health, University of Ottawa; Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; Children's Hospital of Eastern Ontario Research Institute, Ottawa; Institute of Health Policy Management and Evaluation, University of Toronto; Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Sciences, Hospital for Sick Children, Toronto, Ontario, Canada; Institute for Research and Health Care (IRCCS) Istituto Giannina Gaslini, Clinica Pediatrica e Reumatologia; Università degli studi di Genova, Genoa; Rheumatology Division, Ospedale Pediatrico Bambino Gesù, Rome, Italy; Amsterdam Rheumatology and Immunology Center/Reade l Emma Children's Hospital, Amsterdam Medical Center, Amsterdam, the Netherlands; Rheumatology, Respiratory, Gastroenterology and Immunology Office Scientific and Regulatory Management Department European Medicines Agency, London, UK; University of Nis, Faculty of Medicine, Department of Pediatric Rheumatology, Nis, Serbia; Pediatric Rheumatology Research Institute, Bad Bramstedt, Germany. esi.morgan_dewitt@cchmc.org.
Objective:
The current Juvenile Idiopathic Arthritis (JIA) Core Set used in randomized controlled trials (RCT) and longitudinal observational studies (LOS) was developed without the input of patients/parents. At the Outcome Measures in Rheumatology (OMERACT) 2016, a special interest group voted to reconsider the core set, incorporating broader input. We describe subsequent work culminating in an OMERACT 2018 plenary and consensus voting.
Methods:
Candidate domains were identified through literature review, qualitative surveys, and online discussion boards (ODB) held with patients with JIA and parents in Australia, Italy, and the United States. A Delphi process with parents, patients, healthcare providers, researchers, and regulators served to edit the domain list and prioritize candidate domains. After the presentation of results, OMERACT workshop participants voted, with consensus set at > 70%.
Results:
Participants in ODB were 53 patients with JIA (ages 15-24 yrs) and 55 parents. Three rounds of Delphi considering 27 domains were completed by 190 (response rate 85%), 201 (84%), and 182 (77%) people, respectively, from 50 countries. There was discordance noted between domains prioritized by patients/parents compared to others. OMERACT conference voting approved domains for JIA RCT and LOS with 83% endorsement. Mandatory domains are pain, joint inflammatory signs, activity limitation/physical function, patient's perception of disease activity (overall well-being), and adverse events. Mandatory in specific circumstances: inflammation/other features relevant to specific JIA categories.
Conclusion:
Following the OMERACT methodology, we developed an updated JIA Core Domain Set. Next steps are to identify and systematically evaluate best outcome measures for these domains.
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