Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study

Jin Kyun Park; Christopher A Mecoli; Helene Alexanderson; Malin Regardt; Lisa Christopher-Stine; María Casal-Domínguez; Ingrid de Groot; Catherine Sarver; Ingrid E Lundberg; Clifton O Bingham 3rd; Yeong Wook Song

doi:10.3899/jrheum.161252

Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study

J Rheumatol. 2017 Nov;44(11):1683-1687. doi: 10.3899/jrheum.161252. Epub 2017 Aug 1.

Authors

Jin Kyun Park^{1

2}, Christopher A Mecoli^{1

2}, Helene Alexanderson^{1

2}, Malin Regardt^{1

2}, Lisa Christopher-Stine^{1

2}, María Casal-Domínguez^{1

2}, Ingrid de Groot^{1

2}, Catherine Sarver^{1

2}, Ingrid E Lundberg^{1

2}, Clifton O Bingham 3rd^{1

2}, Yeong Wook Song^{3

4}

Affiliations

¹ 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.
² 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.
³ 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. ysong@snu.ac.kr.
⁴ 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. ysong@snu.ac.kr.

Abstract

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.

Keywords: DELPHI; MYOSITIS; OMERACT; OUTCOME ASSESSMENT; PATIENT-REPORTED OUTCOMES.

MeSH terms

Delphi Technique
Focus Groups
Humans
Myositis / diagnosis*
Myositis / therapy*
Patient Reported Outcome Measures*
Rheumatology
Severity of Illness Index
Symptom Assessment

Abstract

MeSH terms

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