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Evidence for Updating the Core Domain Set of Outcome Measures for Juvenile Idiopathic Arthritis: Report from a Special Interest Group at OMERACT 2016. J Rheumatol 2017 Dec;44(12):1884-1888

Date

08/16/2017

Pubmed ID

28811355

Pubmed Central ID

PMC5914507

DOI

10.3899/jrheum.161389

Scopus ID

2-s2.0-85037127244   4 Citations

Abstract

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.

Author List

Morgan EM, Riebschleger MP, Horonjeff J, Consolaro A, Munro JE, Thornhill S, Beukelman T, Brunner HI, Creek EL, Harris JG, Horton DB, Lovell DJ, Mannion ML, Olson JC, Rahimi H, Gallo MC, Calandra S, Ravelli A, Ringold S, Shenoi S, Stinson J, Toupin-April K, Strand V, Bingham CO 3rd

Author

Judyann C. Olson MD Associate Professor in the Pediatrics department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Antirheumatic Agents
Arthritis, Juvenile
Consensus
Humans
Patient Participation
Rheumatology
jenkins-FCD Prod-480 9a4deaf152b0b06dd18151814fff2e18f6c05280