Assessing the content validity of patient-reported outcome measures in adult myositis: A report from the OMERACT myositis working group

Affiliations

¹ Department of Medicine, Johns Hopkins University, Baltimore, MD, USA.
² Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea.
³ Physiotherapist, Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine Solna, Rheumatology Unit, Karolinska Institutet, and Medical Unit Occupational Therapy and Physical therapy, Karolinska University Hospital, Solna, Stockholm, Sweden.
⁴ Occupational Therapist, Department of Neurobiology, Care Sciences and Society Division of Occupational Therapy, Karolinska Institutet and Medical Unit Occupational Therapy and Physical therapy, Karolinska University Hospital, Solna, Stockholm, Sweden.
⁵ Dept Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Australia.
⁶ Patient Research Partner, the Netherlands.
⁷ Patient Research Partner, USA.
⁸ Division of Rheumatology, Department of Medicine, Karolinska University, Hospital, Karolinska Institutet, Solna, Stockholm, Sweden; Center for Global health, University of Ottawa, Ottawa, ON, Canada.
⁹ Department of Neurology, Amsterdam University Medical Centers, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands.
¹⁰ Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
¹¹ Division of Rheumatology, Department of Medicine, Johns Hopkins University, 5200 Eastern Ave, MFL Bldg, Center Tower, Suite 4100, Baltimore 21224, MD, USA.
¹² Division of Rheumatology, Department of Medicine, Johns Hopkins University, 5200 Eastern Ave, MFL Bldg, Center Tower, Suite 4100, Baltimore 21224, MD, USA. Electronic address: cmecoli1@jhmi.edu.

PMID: 32906029
PMCID: PMC7646936
DOI: 10.1016/j.semarthrit.2020.06.006

Assessing the content validity of patient-reported outcome measures in adult myositis: A report from the OMERACT myositis working group

Tina Esfandiary et al. Semin Arthritis Rheum. 2020 Oct.

. 2020 Oct;50(5):943-948.

doi: 10.1016/j.semarthrit.2020.06.006. Epub 2020 Jun 17.

Authors

Affiliations

¹ Department of Medicine, Johns Hopkins University, Baltimore, MD, USA.
² Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea.
³ Physiotherapist, Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine Solna, Rheumatology Unit, Karolinska Institutet, and Medical Unit Occupational Therapy and Physical therapy, Karolinska University Hospital, Solna, Stockholm, Sweden.
⁴ Occupational Therapist, Department of Neurobiology, Care Sciences and Society Division of Occupational Therapy, Karolinska Institutet and Medical Unit Occupational Therapy and Physical therapy, Karolinska University Hospital, Solna, Stockholm, Sweden.
⁵ Dept Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Australia.
⁶ Patient Research Partner, the Netherlands.
⁷ Patient Research Partner, USA.
⁸ Division of Rheumatology, Department of Medicine, Karolinska University, Hospital, Karolinska Institutet, Solna, Stockholm, Sweden; Center for Global health, University of Ottawa, Ottawa, ON, Canada.
⁹ Department of Neurology, Amsterdam University Medical Centers, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands.
¹⁰ Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
¹¹ Division of Rheumatology, Department of Medicine, Johns Hopkins University, 5200 Eastern Ave, MFL Bldg, Center Tower, Suite 4100, Baltimore 21224, MD, USA.
¹² Division of Rheumatology, Department of Medicine, Johns Hopkins University, 5200 Eastern Ave, MFL Bldg, Center Tower, Suite 4100, Baltimore 21224, MD, USA. Electronic address: cmecoli1@jhmi.edu.

PMID: 32906029
PMCID: PMC7646936
DOI: 10.1016/j.semarthrit.2020.06.006

Abstract

Objective: To investigate the content validity of several patient-reported outcome measures (PROMs) in patients with idiopathic inflammatory myopathies (IIM).

Methods: Seven individual PROM instruments were selected by the Outcome Measures in Rheumatology (OMERACT) Myositis Working Group relating to the following domains: pain, fatigue, physical function and physical activity. Twenty patients from the Johns Hopkins Myositis Center were selected for one-on-one face-to-face or phone interviews for cognitive interviewing of individual PROMs to assess comprehension and content validity. Additionally, patients were asked if they thought muscle symptoms, an area originally identified in qualitative studies, were encapsulated by the other four domains.

Results: The majority of patients (>70%) felt that each of the instruments was clear, easy to read and understand, and could be used for assessment of its domain. Two-thirds (66%) of patients felt that 'muscle symptoms' were captured by the other domains.

Conclusions: We provided evidence to support adequate content validity for several PROMs. Further research is needed to determine whether 'muscle symptoms' warrant a separate domain.

Keywords: Idiopathic inflammatory myositis; Outcome assessment Patient; Patient-reported outcomes.

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Conflict of interest statement

Declaration of Competing Interests The authors have no conflicts of interest.

References

1. Christopher-Stine L, Plotz PH. Adult inflammatory myopathies. Best Pract Res Clin Rheumatol. 2004;18(3):331–344. - PubMed
1. Lundberg IE, Miller FW, Tjärnlund A, Bottai M. Diagnosis and classification of idiopathic inflammatory myopathies. J Intern Med. 2016;280:39–51. - PMC - PubMed
1. Khan S, Christopher-Stine L. Polymyositis, dermatomyositis, and autoimmune necrotizing myopathy: Clinical features. Rheum Dis Clin North Am. 2011;37:143–158. - PubMed
1. Miller FW, Rider LG, Chung YL, Cooper R, Danko K, Farewell V et al. Proposed preliminary core set measures for disease outcome assessment in adult and juvenile idiopathic inflammatory myopathies. Rheumatology (Oxford, England). 2001;40:1262–1273. - PubMed
1. Mecoli CA, Park JK, Alexanderson H, Regardt M, Needham M, de Groot I et al. Perceptions of patients, caregivers, and healthcare providers of idiopathic inflammatory myopathies: An international OMERACT study. The Journal of rheumatology. 2019;46:106–111. - PMC - PubMed

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Assessing the content validity of patient-reported outcome measures in adult myositis: A report from the OMERACT myositis working group

Affiliations

Assessing the content validity of patient-reported outcome measures in adult myositis: A report from the OMERACT myositis working group

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical