@article{5421ac6045ef4c0cbfa00e5301c2c985,
title = "OMERACT 2018 modified patient-reported outcome domain core set in the life impact area for adult idiopathic inflammatory myopathies",
abstract = "Objective. To present and vote on a myositis modified patient-reported outcome core domain set in the life impact area at the Outcome Measures in Rheumatology (OMERACT) 2018. Methods. Based on results from international focus groups and Delphi surveys, a draft core set was developed. Results. Domains muscle symptoms, fatigue, level of physical activity, and pain reached ≥ 70% consensus and were mandatory to assess in all trials. Domains lung, joint, and skin symptoms were mandatory in specific circumstances. This core set was endorsed by > 85% at OMERACT 2018. Conclusion. We propose a life impact core set for patients with idiopathic inflammatory myopathies and will proceed with instrument selections.",
keywords = "Delphi, Myositis, Omeract, Outcome assessment, Patient-reported outcomes",
author = "Malin Regardt and Mecoli, {Christopher A.} and Park, {Jin Kyun} and {de Groot}, Ingrid and Catherine Sarver and Merrilee Needham and {de Visser}, Marianne and Beverly Shea and Bingham, {Clifton O.} and Lundberg, {Ingrid E.} and Song, {Yeong W.} and Lisa Christopher-Stine and Helene Alexanderson",
note = "Funding Information: Support for this project comes from a grant from the Korea Health Technology R&D Project through the Korea Health Industry Development Institute, funded by the Ministry of Health & Welfare, Republic of Korea (grant number: HI14C1277); The Swedish Rheumatism Association; The B{\"o}rje Olhagen foundation (supported by grants provided by the Stockholm County Council ALF project); the Diplomat Specialty Infusion Group; Option Care; and Nufactor Inc. We thank all participating patients, caregivers, healthcare providers, and IMACS for scientific advice. We acknowledge The Myositis Association, the Netherlands{\textquoteright} patient association (“Spierziekten Nederland”), the myositis association of Australia, and Perron Institute of Neuroscience Research, and the IMACS for distributing the Delphi surveys. Funding Information: From the Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital, Department of Neurobiology, Care Science and Society, Division of Physiotherapy and Department of Medicine, Karolinska Institutet; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska Institutet, Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, Korea; Division of Rheumatology, Fiona Stanley Hospital, Institute for Immunology and Infectious Diseases, Murdoch University, Perth; The Notre Dame University Fremantle, Fremantle, Australia; Amsterdam UMC, University of Amsterdam, Department of Neurology, Amsterdam Neuroscience, Amsterdam, the Netherlands; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada. Support for this project comes from a grant from the Korea Health Technology R&D Project through the Korea Health Industry Development Institute, funded by the Ministry of Health & Welfare, Republic of Korea (grant number: HI14C1277); The Swedish Rheumatism Association; The B{\"o}rje Olhagen foundation (supported by grants provided by the Stockholm County Council ALF project); the Diplomat Specialty Infusion Group; Option Care; and Nufactor Inc. Publisher Copyright: . The Journal of Rheumatology Copyright {\textcopyright} 2019. All rights reserved.",
year = "2019",
doi = "10.3899/jrheum.181065",
language = "English (US)",
volume = "46",
pages = "1351--1354",
journal = "Journal of Rheumatology",
issn = "0315-162X",
publisher = "Journal of Rheumatology",
number = "10",
}