Development of a patient-centered core domain set for prospective observational longitudinal outcome studies in rheumatoid arthritis: an OMERACT initiative

Sebastian Bruera; Loreto Carmona; Maria A Lopez-Olivo; Tiffany Westrich-Robertson; Lyn March; Jose B Negron; Robin Christensen; Vibeke Strand; Francesca Ingegnoli; Niti Goel; Beverley Shea; Peter Tugwell; Amye Leong; Clifton O Bingham; Catherine L Hill; Maria E Suarez-Almazor

doi:10.1016/j.semarthrit.2021.08.003

Development of a patient-centered core domain set for prospective observational longitudinal outcome studies in rheumatoid arthritis: an OMERACT initiative

Semin Arthritis Rheum. 2021 Oct;51(5):1113-1116. doi: 10.1016/j.semarthrit.2021.08.003. Epub 2021 Aug 19.

Authors

Sebastian Bruera¹, Loreto Carmona², Maria A Lopez-Olivo³, Tiffany Westrich-Robertson⁴, Lyn March⁵, Jose B Negron⁵, Robin Christensen⁶, Vibeke Strand⁷, Francesca Ingegnoli⁸, Niti Goel⁹, Beverley Shea¹⁰, Peter Tugwell¹¹, Amye Leong¹¹, Clifton O Bingham¹², Catherine L Hill¹³, Maria E Suarez-Almazor¹⁴

Affiliations

¹ Department of Immunology, Allergy, and Rheumatology, Baylor College of Medicine, Houston, TX, USA.
² Instituto de Salud Musculoesquelética, Madrid, Spain.
³ Department of Health Services Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
⁴ International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), St. Louis, MO.
⁵ University of Sydney Florance and Cope Professorial Department of Rheumatology, Institute of Bone and Joint Research, Kolling Institute and Royal North Shore Hospital, St Leonards, NSW Australia.
⁶ Section for Biostatistics and Evidence-Based Research, the Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen & Research Unit of Rheumatology, Department of Clinical Research, University of Southern Denmark, Odense University Hospital, Denmark.
⁷ Division of Immunology and Rheumatology, Stanford University, Palo Alto, CA, USA.
⁸ Division of Clinical Rheumatology, Pini Hospital, Dept. of Clinical Sciences & Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, Università degli Studi di Milano, Milano, Italy.
⁹ Division of Rheumatology and Immunology, Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA.
¹⁰ Ottawa Hospital Research Institute, School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
¹¹ Department of Medicine and School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
¹² Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore MD, USA.
¹³ Discipline of Medicine, University of Adelaide, and Rheumatology Unit, The Queen Elizabeth Hospital, Woodville, Australia.
¹⁴ Department of Health Services Research and Section of Rheumatology and Clinical Immunology, The University of Texas MD Anderson Cancer Center, Houston, TX, USA. Electronic address: [email protected].

PMID: 34446270
DOI: 10.1016/j.semarthrit.2021.08.003

Abstract

Objectives: To identify patient-centered core domains for prospective longitudinal observational studies (LOS) in rheumatoid arthritis.

Methods: Our working group held a virtual meeting in November 2020 to review data from a literature review and patient qualitative interviews, and to discuss strategies to move forward on domain identification and selection using the OMERACT 2.1 domain selection process.

Results: Important candidate domains and subdomains were identified including in the areas of life impact. Consensus was reached on moving forward with a Delphi process.

Conclusions: The meeting provided future directions to identify and select a core set of domains for use in LOS.

Keywords: OMERACT; cohort studies; observational studies; patient registries; patient-centered outcomes; rheumatoid arthritis.

Publication types

Observational Study

MeSH terms

Arthritis, Rheumatoid* / drug therapy
Consensus
Humans
Outcome Assessment, Health Care*
Patient-Centered Care
Prospective Studies