Patients’ Experience of Myositis and Further Validation of a Myositis-specific Patient Reported Outcome Measure — Establishing Core Domains and Expanding Patient Input on Clinical Assessment in Myositis. Report from OMERACT 12

Regardt, Malin; Basharat, Pari; Christopher‐Stine, Lisa; Sarver, Catherine; Björn, Anita; Lundberg, Ingrid E.; Song, Yeong Wook; Bingham, Clifton O.; Alexanderson, Helene

doi:10.3899/jrheum.141243

Cited by 31 publications

(21 citation statements)

References 12 publications

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“…Based on the qualitative content analysis of transcripts from the 11 focus groups involving 66 participants from 3 countries, an initial list of 26 candidate domains was constructed (12,13). During discussions between SIG investigators and PRPs, content and wording of the items for the first round online modified Delphi were revised until they best reflected the original intended domains and subdomains and would be comprehensible by patients.…”

Section: Methodsmentioning

confidence: 99%

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

Park

Mecoli²,

Alexanderson³

et al. 2017

J Rheumatol

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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 (PROs) in IIM followed by conducting international focus groups to elicit patient perspectives of myositis symptoms and impacts. 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 Delphi survey, 643 patients participated from the USA (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 rated domains were muscle symptoms, fatigue, interactions with healthcare, medication side effects, and pain. During 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 the IIM. Conclusions. 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.

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Section: Methodsmentioning

confidence: 99%

“…To study patients’ experiences of disease we previously reported the results of several focus group sessions conducted in three countries, and analyzed transcripts to identify domains that were described by patients as relevant to their experience of myositis (12). These results were presented at the OMERACT meeting in 2014.…”

Section: Introductionmentioning

confidence: 99%

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

Park

Mecoli²,

Alexanderson³

et al. 2017

J Rheumatol

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“…High-level themes included pain, physical stiffness or loss of flexibility, fatigue, emotional impact, the effect of the disease on relationships and treatment-related side effects [103]. The Myositis Activities Profile (MAP), a 31 item disease-specific questionnaire with 4 subscales of movement, social, self-care, domestic and leisure activities was examined by the OMERACT group and also taken back to the patients in individual interviews using the “think aloud” technique, leading to a revised MAP that will be tested by Rasch methodology to optimize subscale and scoring and eliminate redundancy [104] (Table 2). …”

Section: Evaluation Of Quality Of Life (Qol) In Iimmentioning

confidence: 99%

213th ENMC International Workshop: Outcome measures and clinical trial readiness in idiopathic inflammatory myopathies, Heemskerk, The Netherlands, 18–20 September 2015

Aggarwal¹,

Allenbach²,

Benveniste

et al. 2016

Neuromuscular Disorders

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“…Based on the qualitative content analysis of transcripts from the 11 focus groups involving 66 participants from 3 countries, an initial list of 26 candidate domains was constructed 12,13 . During discussions between SIG investigators and PRP, content and wording of the items for the first round online modified Delphi were revised until they best reflected the original intended domains and subdomains and would be comprehensible by patients.…”

Section: Methodsmentioning

confidence: 99%

“…To study patients' experiences of disease, we previously reported the results of several focus group sessions conducted in 3 countries, and analyzed transcripts to identify domains that were described by patients as relevant to their experience of myositis 12 . These results were presented at the OMERACT meeting in 2014.…”

mentioning

confidence: 99%

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

2017

J Rheumatol

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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.

show abstract

Patients’ Experience of Myositis and Further Validation of a Myositis-specific Patient Reported Outcome Measure — Establishing Core Domains and Expanding Patient Input on Clinical Assessment in Myositis. Report from OMERACT 12

Abstract: The currently used PROM do not assess symptoms or the effects of disease that are most important to patients; this emphasizes the necessity of patient involvement. Our work provides concrete examples for PRO identification.

Cited by 31 publications

References 12 publications

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

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

213th ENMC International Workshop: Outcome measures and clinical trial readiness in idiopathic inflammatory myopathies, Heemskerk, The Netherlands, 18–20 September 2015

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

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