更新幼年特发性关节炎结局测量核心域集的证据：来自 2016 年 OMERACT 特别兴趣小组的报告。
Evidence for Updating the Core Domain Set of Outcome Measures for Juvenile Idiopathic Arthritis: Report from a Special Interest Group at OMERACT 2016.
机构信息
Division 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.
E.M. Morgan, MD, Associate Professor, Division of Rheumatology, Cincinnati Children's Hospital Medical Center; M.P. Riebschleger, MD, Clinical Lecturer, Pediatric Rheumatology and Pediatric Health Services Research, University of Michigan CS Mott Children's Hospital; J. Horonjeff, PhD, Instructor, Office of Research, Division of Rheumatology, Columbia University Medical Center; A. Consolaro, MD, PhD, Assistant Professor, Division of Rheumatology, Istituto Giannina Gaslini, and University of Genoa; J.E. Munro, MBBS, Associate Professor, Head of Rheumatology at the Royal Children's Hospital, and Group Leader, Arthritis Research, Murdoch Children's Research Institute; S. Thornhill, AA, Qualitative Research Consultant, Thornhill Associates; T. Beukelman, MD, Associate Professor, Division of Rheumatology, University of Alabama at Birmingham; H.I. Brunner, Professor, Division of Rheumatology, Cincinnati Children's Hospital Medical Center; E.L. Creek, MBA, Senior Director, Help and Support, Arthritis Foundation; J.G. Harris, MD, Assistant Professor, Division of Rheumatology, Children's Mercy; D.B. Horton, MD, Assistant Professor, Division of Pediatric Rheumatology, Rutgers Robert Wood Johnson Medical School, Institute for Health, Health Care Policy and Aging Research; D.J. Lovell, MD, Professor, Division of Rheumatology, Cincinnati Children's Hospital Medical Center; M.L. Mannion, MD, Assistant Professor of Rheumatology, University of Alabama at Birmingham; J.C. Olson, MD, Associate Professor, Medical College of Wisconsin; H. Rahimi, MD, Assistant Professor, Division of Rheumatology, University of Rochester, Golisano Children's Hospital; M.C. Gallo, MD, Research Contract, Istituto Giannina Gaslini; S. Calandra, MD, Pediatric Resident, Istituto Giannina Gaslini; A. Ravelli, MD, Professor of Pediatrics, University of Genoa and Istituto Giannina Gaslini; S. Ringold, MD, Assistant Professor, Division of Rheumatology, Seattle Children's Hospital; S. Shenoi, MBBS, Assistant Professor, Seattle Children's Hospital; J. Stinson, PhD, Senior Scientist, The Hospital for Sick Children, and Associate Professor, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto; K. Toupin-April, PhD, Associate Scientist, Children's Hospital of Eastern Ontario Research Institute, and Assistant Professor, Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; V. Strand, MD, Adjunct Clinical Professor, Division of Immunology/Rheumatology, Stanford University; C.O. Bingham III, MD, Professor of Medicine, Director, Johns Hopkins Arthritis Center, Johns Hopkins University.
出版信息
J Rheumatol. 2017 Dec;44(12):1884-1888. doi: 10.3899/jrheum.161389. Epub 2017 Aug 15.
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.
目的
目前的幼年特发性关节炎（JIA）核心组于 1997 年制定，旨在使用统计和共识为基础的技术确定 JIA 临床试验中使用的结果衡量标准，但没有患者参与。多年来，人们越来越认识到患者/家长参与研究过程的重要性。一个制定关节病的结局测量（OMERACT）JIA 核心组工作组成立，以确定当前核心组的结果领域是否与参与者相关，或者核心组领域是否需要修订。
方法
来自美国、加拿大、澳大利亚和欧洲的 24 人，包括患者伙伴，组成了工作组。在 OMERACT 过滤器 2.0 过程的指导下，我们进行了（1）系统的文献回顾，以确定结果领域，（2）基于网络的调查（142 名患者，343 名家长），（3）创意研究（120 名家长），（4）4 个在线讨论板（24 名患者，20 名家长），以及（5）在 OMERACT 13 （2016）会议上的特别兴趣小组（SIG）活动。
结果
对 JIA 研究中使用的结果领域进行 MEDLINE 搜索，产生了 5956 条引文，其中 729 条引文进行了全文审查，并确定了除当前 JIA 核心组之外的其他领域。对 JIA 影响的定性研究确定了多个额外的领域，包括疼痛和参与。在 SIG 中的 21 名参与者就修订整个 JIA 核心组的必要性达成了共识。
结论
定性研究和文献回顾的结果支持扩大 JIA 核心组的必要性，除其他外，还考虑到额外的以患者/家长为中心的结果、临床数据和影像学数据。
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