TY - JOUR
T1 - Advancing the development of patient-reported outcomes for adult myositis at OMERACT 2016
T2 - An International Delphi Study
AU - Park, Jin Kyun
AU - Mecoli, Christopher A.
AU - Alexanderson, Helene
AU - Regardt, Malin
AU - Christopher-Stine, Lisa
AU - Casal-Domínguez, María
AU - De Groot, Ingrid
AU - Sarver, Catherine
AU - Lundberg, Ingrid E.
AU - Bingham, Clifton O.
AU - Song, Yeong Wook
N1 - Funding Information:
From 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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503) Human Subjects Core from the US National Institutes of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health. Dr. Bingham is supported in part through a Methods Award SC14-1402-10818 from the Patient Centered Outcomes Research Institute. Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. Dr. Alexanderson and Dr. Regardt are supported by the Swedish Rheumatism Association. Dr. Song and Dr. Park are supported by a grant of the Korea Health technology R&D project through the Korea Health Industry Development Institute, funded by the Ministry of Health and Welfare, Republic of Korea (grant number: HI14C1277). J.K. Park, MD, Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital; H. Alexanderson, PhD, Physiotherapist, Department of Neurology, Care Science and Society, Division of Physiotherapy, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; M. Regardt, PhD, Occupational Therapist, Department of Learning, Informatics and Medical Education, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; L. Christopher-Stine, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; C.A. Mecoli, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; M.C. Domínguez, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; C. Sarver, Patient Research Partner; I. de Groot, Patient Research Partner; I.E. Lundberg, MD, PhD, Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, and Hospital in Solna, Karolinska Institutet; C.O. Bingham 3rd, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; Y.W. Song, MD, PhD, Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University. Dr. Park and Dr. Mecoli contributed equally to this work. Address correspondence to Dr. Y.W. Song, Division of Rheumatology, Department of Internal Medicine, Seoul National University College of Medicine; 101 Daehak-ro, Jongno-gu, Seoul 03080, South Korea. E-mail: ysong@snu.ac.kr Accepted for publication June 9, 2017.
Publisher Copyright:
Copyright © 2017. All rights reserved.
PY - 2017/11/1
Y1 - 2017/11/1
N2 - Objective: To 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. Methods: Based 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). Results: In 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. Conclusion: Further 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.
AB - Objective: To 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. Methods: Based 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). Results: In 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. Conclusion: Further 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.
KW - Myositis
KW - Omeract delphi
KW - Outcome assessment
KW - Patient-reported outcomes
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U2 - 10.3899/jrheum.161252
DO - 10.3899/jrheum.161252
M3 - Article
C2 - 28765245
AN - SCOPUS:85032616673
SN - 0315-162X
VL - 44
SP - 1683
EP - 1687
JO - Journal of Rheumatology
JF - Journal of Rheumatology
IS - 11
ER -