title: Patient-reported outcomes and adult patients' disease experience in the idiopathic inflammatory myopathies. report from the OMERACT 11 Myositis Special Interest Group.
abstract: The newly formed Outcome Measures in Rheumatology (OMERACT) Myositis Special Interest Group (SIG) was established to examine patient-reported outcome measures (PROM) in myositis. At OMERACT 11, a literature review of PROM used in the idiopathic inflammatory myopathies (IIM) and other neuromuscular conditions was presented. The group examined in more detail 2 PROM more extensively evaluated in patients with IIM, the Myositis Activities Profile, and the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire, through the OMERACT filter of truth, discrimination, and feasibility. Preliminary results from a qualitative study of patients with myositis regarding their symptoms were discussed that emphasized the range of symptoms experienced: pain, physical tightness/stiffness, fatigue, disease effect on emotional life and relationships, and treatment-related side effects. Following discussion of these results and following additional discussions since OMERACT 11, a research agenda was developed. The next step in evaluating PROM in IIM will require additional focus groups with a spectrum of patients with different myositis disease phenotypes and manifestations across a range of disease activity, and from multiple international settings. The group will initially focus on dermatomyositis and polymyositis in adults. Qualitative analysis will facilitate the identification of commonalities and divergent patient-relevant aspects of disease, insights that are critical given the heterogeneous manifestations of these diseases. Based on these qualitative studies, existing myositis PROM can be examined to more thoroughly assess content validity, and will be important to identify gaps in domain measurement that will be required to develop a preliminary core set of patient-relevant domains for IIM.
authors.affiliation: From the Department of Neuroscience, Care Science and Society, Division of Physical Therapy, Karolinska Institutet, Stockholm, Sweden; Department of Rheumatology, Klinik St. Katharinental, Diessenhofen, Switzerland; Division of Rheumatology, Johns Hopkins University, Baltimore; Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Karolinska Institutet, Stockholm, Sweden; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, Korea.
authors.forename: Helene
authors.initials: H
authors.lastname: Alexanderson
authors.forename: Maria
authors.initials: M
authors.lastname: Del Grande
authors.forename: Clifton O
authors.initials: CO
authors.lastname: Bingham
authors.forename: Ana-Maria
authors.initials: AM
authors.lastname: Orbai
authors.forename: Catherine
authors.initials: C
authors.lastname: Sarver
authors.forename: Katherine
authors.initials: K
authors.lastname: Clegg-Smith
authors.forename: Ingrid E
authors.initials: IE
authors.lastname: Lundberg
authors.forename: Yeong Wook
authors.initials: YW
authors.lastname: Song
authors.forename: Lisa
authors.initials: L
authors.lastname: Christopher-Stine
mesh_terms: D000328:Adult; D004185:Disability Evaluation; D006801:Humans; D009220:Myositis / Q000175:diagnosis*; D017063:Outcome Assessment, Health Care; D063868:Patient Outcome Assessment; D012219:Rheumatology / Q000379:methods; D012720:Severity of Illness Index; D016896:Treatment Outcome
keywords: MYOSITIS; OUTCOME AND PROCESS ASSESSMENT; PATIENT-REPORTED OUTCOMES