ArticleThe Journal of rheumatology2017
Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study.
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Article in The Journal of rheumatology, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 15 papers, 1 of them a synthesis that pooled it.
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15citing papers in PubMed, 1 pooled it
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Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Systematic review of international Delphi surveys for core outcome set development: representation of international patients.BMJ open · 2020Pooled it
- Construct validity of PROMIS pain interference, fatigue, and physical function as patient-reported outcomes in adults with idiopathic inflammatory myopathies: An international study from the OMERACT myositis working group.Seminars in arthritis and rheumatism · 2024Article
- Responsiveness and meaningful thresholds of PROMIS pain interference, fatigue, and physical function forms in adults with idiopathic inflammatory myopathies: Report from the OMERACT Myositis Working Group.Seminars in arthritis and rheumatism · 2024Article
- Developing consensus on core outcome sets of domains for acute, the transition from acute to chronic, recurrent/episodic, and chronic pain: results of the INTEGRATE-pain Delphi process.EClinicalMedicine · 2023Article
- Reliability and validity of PROMIS physical function, pain interference, and fatigue as patient reported outcome measures in adult idiopathic inflammatory myopathies: International study from the OMERACT myositis working group.Seminars in arthritis and rheumatism · 2023Article
- Article
- Investigating characteristics of idiopathic inflammatory myopathy flares using daily symptom data collected via a smartphone app.Rheumatology (Oxford, England) · 2022Article
- Secondary analysis of data from a core outcome set for burns demonstrated the need for involvement of lower income countries.Journal of clinical epidemiology · 2022Article
- Review
- Patient-reported dermatomyositis and polymyositis flare symptoms are associated with disability, productivity loss, and health care resource use.Journal of managed care & specialty pharmacy · 2020Article
- Trends in idiopathic inflammatory myopathies: cross-sectional data from the German National Database.Rheumatology international · 2020Observational
- Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry.Pediatric rheumatology online journal · 2020Article
- Patient insights on living with idiopathic inflammatory myopathy and the limitations of disease activity measurement methods - a qualitative study.BMC rheumatology · 2020Article
- Update on outcome assessment in myositis.Nature reviews. Rheumatology · 2018Review
- Current Classification and Management of Inflammatory Myopathies.Journal of neuromuscular diseases · 2018Review
Corrections and comments
- Erratum issued
- Erratum issued
Authors and funding
11 authors.
Jin Kyun ParkFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Christopher A MecoliFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Helene AlexandersonFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Malin RegardtFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Lisa Christopher-StineFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
María Casal-DomínguezFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Ingrid de GrootFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Catherine SarverFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Ingrid E LundbergFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Clifton O BinghamFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
Yeong Wook SongFrom the Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, and Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA. ysong@snu.ac.kr.
Funding
Multidisciplinary Rheumatology Training ProgramT32AR048522 · NIAMS · JOHNS HOPKINS UNIVERSITY · PI CLIFTON O BINGHAM, LIVIA A CASCIOLA-ROSEN · 2003 to 2026
$6.4MPhenotype-Specific Immune Responses in the Systemic VasculitidesP30AR053503 · NIAMS · JOHNS HOPKINS UNIVERSITY · PI ROSEN, ANTONY · 2006 to 2015
$6.4MNIAMS NIH HHS P30 AR053503NIAMS NIH HHS T32 AR048522
Abstract
objectiveTo define a set of core patient-reported domains and respective instruments for use in idiopathic inflammatory myopathies (IIM). Previously, we reported a systematic literature review on patient-reported outcomes (PRO) in IIM followed by conducting international focus groups to elicit patient perspectives of myositis symptoms and effects.
methodsBased on qualitative content analysis of focus groups, an initial list of 26 candidate domains was constructed. We subsequently conducted an international modified Delphi survey to identify the importance of each of the 26 domains. Participants were asked to rate each domain on a scale of 0-10 (0 = not important, 10 = very important).
resultsIn this first round of the Delphi survey, 643 patients participated from the United States (n = 543), Sweden (n = 49), and South Korea (n = 51). Of the 26 domains, 19 (73%) were rated of high importance (≥ 7/10). The top 5 domains were muscle symptoms, fatigue, interactions with healthcare, medication side effects, and pain. During Outcome Measures in Rheumatology (OMERACT) 2016, we discussed the goal for ultimate reduction in the number of domains and the importance of considering representation of healthcare providers from other specialties, caregivers, representatives of pharmaceutical industries, and regulatory authorities in the next rounds of Delphi to represent broader perspectives on IIM.
conclusionFurther prioritization and a reduction in the number of domains will be needed for the next Delphi. At the next biennial OMERACT meeting, we aim to present and seek voting on a Myositis Preliminary PRO Core Set to enable ultimate measure selection and development.
Indexed as
Patient Reported Outcome MeasuresDelphi TechniqueFocus GroupsHumansMyositisRheumatologySeverity of Illness IndexSymptom AssessmentDELPHIMYOSITISOMERACTOUTCOME ASSESSMENTPATIENT-REPORTED OUTCOMES
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.