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Evidence for Updating the Core Domain Set of Outcome Measures for Juvenile Idiopathic Arthritis: Report from a
Esi M Morgan1,2, Meredith P Riebschleger3,4, Jennifer Horonjeff3,4
1Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; Pediatric Rheumatology and Pediatric Health Services Research, University of Michigan CS Mott Children's Hospital, Ann Arbor, Michigan; 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; Thornhill Associates, Hermosa Beach; Division of Immunology/Rheumatology, Stanford University, Stanford, California; Division of Rheumatology, University of Alabama at Birmingham, Birmingham, Alabama; Arthritis Foundation, Atlanta, Georgia; Division of Rheumatology, Children's Mercy, 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; Medical College of Wisconsin, Milwaukee, Wisconsin; Division of Rheumatology, Seattle Children's Hospital, Seattle, Washington; Johns Hopkins Arthritis Center, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Istituto Giannina Gaslini; University of Genoa, Genoa, Italy; Rheumatology, Royal Children's Hospital; Murdoch Children's Research Institute, Melbourne, Australia; The Hospital for Sick Children, and Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto; Children's Hospital of Eastern Ontario Research Institute, Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa, Ottawa, Ontario, Canada. esi.morgan_dewitt@cchmc.org.
Objective:
The current Juvenile Idiopathic Arthritis (JIA) Core Set was developed in 1997 to identify the outcome measures to be used in JIA clinical trials using statistical and consensus-based techniques, but without patient involvement. The importance of patient/parent input into the research process has increasingly been recognized over the years. An Outcome Measures in Rheumatology (OMERACT) JIA Core Set Working Group was formed to determine whether the outcome domains of the current core set are relevant to those involved or whether the core set domains should be revised.
Methods:
Twenty-four people from the United States, Canada, Australia, and Europe, including patient partners, formed the working group. Guided by the OMERACT Filter 2.0 process, we performed (1) a systematic literature review of outcome domains, (2) a Web-based survey (142 patients, 343 parents), (3) an idea-generation study (120 parents), (4) 4 online discussion boards (24 patients, 20 parents), and (5) a Special Interest Group (SIG) activity at the OMERACT 13 (2016) meeting.
Results:
A MEDLINE search of outcome domains used in studies of JIA yielded 5956 citations, of which 729 citations underwent full-text review, and identified additional domains to those included in the current JIA Core Set. Qualitative studies on the effect of JIA identified multiple additional domains, including pain and participation. Twenty-one participants in the SIG achieved consensus on the need to revise the entire JIA Core Set.
Conclusion:
The results of qualitative studies and literature review support the need to expand the JIA Core Set, considering, among other things, additional patient/parent-centered outcomes, clinical data, and imaging data.
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