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Research ArticleSpondyloarthritis

Domains to Be Considered for the Core Outcome Set of Axial Spondyloarthritis: Results From a 3-round Delphi Survey

Anne Boel, Victoria Navarro-Compán, Annelies Boonen, Philip Mease, Uta Kiltz, Maxime Dougados, Robert Landewé and Désirée van der Heijde
The Journal of Rheumatology December 2021, 48 (12) 1810-1814; DOI: https://doi.org/10.3899/jrheum.210206
Anne Boel
1A. Boel, MSc, D. van der Heijde, MD, PhD, Rheumatology Department, Leiden University Medical Centre, Leiden, the Netherlands;
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  • ORCID record for Anne Boel
  • For correspondence: a.h.e.m.boel@lumc.nl
Victoria Navarro-Compán
2V. Navarro-Compán, MD, PhD, Rheumatology Department, University Hospital La Paz, IdiPaz, Madrid, Spain;
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  • ORCID record for Victoria Navarro-Compán
Annelies Boonen
3A. Boonen, MD, PhD, Prof, Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Centre, and Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, the Netherlands;
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Philip Mease
4P.J. Mease, MD, PhD, Prof, Rheumatology, Swedish Medical Center/Providence St. Joseph Health and University of Washington, Seattle, Washington, USA;
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Uta Kiltz
5U. Kiltz, MD, PhD, Rheumatology, Rheumazentrum Ruhrgebiet, Ruhr University Bochum, Herne, Germany;
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Maxime Dougados
6M. Dougados, MD, PhD, Prof, Rheumatology Department, Hôpital Cochin, AP-HP, and INSERM (U1153): Clinical Epidemiology and Biostatistics, PRES Sorbonne Paris-Cité, Paris, France;
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Robert Landewé
7R. Landewé, MD, PhD, Prof, Rheumatology Department, Zuyderland Medical Center Heerlen, Heerlen, and Rheumatology, Amsterdam Rheumatology Center, Amsterdam, the Netherlands.
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Désirée van der Heijde
1A. Boel, MSc, D. van der Heijde, MD, PhD, Rheumatology Department, Leiden University Medical Centre, Leiden, the Netherlands;
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Abstract

Objective Advances in the field of axial spondyloarthritis (axSpA) and the methodology to develop core sets have led the Assessment of SpondyloArthritis international Society (ASAS) group to update the ASAS–Outcomes in Rheumatology (OMERACT) core set. An important aspect was to ensure it would be applicable to the entire spectrum of axSpA. The first step was to define the most relevant disease domains.

Methods A 3-round Delphi survey was conducted to gather opinions of 188 patients and 188 axSpA experts to define the most relevant disease domains to be included in the core set. The Delphi survey evaluated 2 separate research settings: (1) studies assessing symptom-modifying therapies; and (2) studies evaluating disease-modifying therapies. Importance of the domains was rated on a 1–9 Likert scale. A domain was considered for inclusion if, for both stakeholder groups, ≥ 70% of participants scored the domain as critical (7–9) and ≤ 15% scored it as not important (1–3) after 3 rounds.

Results A total of 132 (70%) patients and 135 (72%) experts completed at least 1 round. After 3 rounds, 7 domains (pain, physical function, stiffness, disease activity, mobility, overall functioning and health, peripheral manifestations) were selected for the symptom-modifying therapies setting. For the disease-modifying therapies setting, 6 domains (physical function, disease activity, mobility, structural damage, extramusculoskeletal manifestations, peripheral manifestations) were selected. All domains selected by experts were also selected by patients. Patients selected all offered domains except emotional function.

Conclusion This study provides the domains selected by patients and axSpA experts that should be considered for the core set for axSpA.

Key Indexing Terms:
  • ankylosing spondylitis
  • outcomes
  • spondyloarthropathies
  • Accepted for publication July 14, 2021.
  • Copyright © 2021 by the Journal of Rheumatology
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1 Dec 2021
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Domains to Be Considered for the Core Outcome Set of Axial Spondyloarthritis: Results From a 3-round Delphi Survey
Anne Boel, Victoria Navarro-Compán, Annelies Boonen, Philip Mease, Uta Kiltz, Maxime Dougados, Robert Landewé, Désirée van der Heijde
The Journal of Rheumatology Dec 2021, 48 (12) 1810-1814; DOI: 10.3899/jrheum.210206

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Domains to Be Considered for the Core Outcome Set of Axial Spondyloarthritis: Results From a 3-round Delphi Survey
Anne Boel, Victoria Navarro-Compán, Annelies Boonen, Philip Mease, Uta Kiltz, Maxime Dougados, Robert Landewé, Désirée van der Heijde
The Journal of Rheumatology Dec 2021, 48 (12) 1810-1814; DOI: 10.3899/jrheum.210206
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Keywords

ANKYLOSING SPONDYLITIS
OUTCOMES
SPONDYLOARTHROPATHIES

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