Mapping of the Outcome Measures in Rheumatology Core Set for Antineutrophil Cytoplasmic Antibody-Associated Vasculitis to the International Classification of Function, Disability and Health

Authors

  • Nataliya Milman,

    Corresponding author
    1. Ottawa Hospital and University of Ottawa, Ottawa, Ontario, Canada
    • 1967 Riverside Drive, Box 37, Ottawa, Ontario, K1H 7W9, Canada. E-mail: nmilman@toh.on.ca

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  • Annelies Boonen,

    1. Maastricht University Medical Centre, Maastricht, The Netherlands
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  • Peter A. Merkel,

    1. Perelman School of Medicine, University of Pennsylvania, Philadelphia
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  • Peter Tugwell

    1. University of Ottawa, Ottawa, Ontario, Canada
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    • Dr. Tugwell has received consulting fees, speaking fees, and/or honoraria (less than $10,000 each) from AstraZeneca, Bristol-Myers Squibb, Chelsea, UCB, and the Canadian Reformulary Group, and provided expert testimony to Pfizer Canada, Hoffman La-Roche, and Eli Lilly, and has received royalties for various journals, textbooks, and articles.


Abstract

Objective

The International Classification of Functioning, Disability and Health (ICF) is a framework and classification of health that describes health along 4 components: body functions, body structures, activities and participation, and contextual factors. This study examined the content of instruments that constitute the Outcome Measures in Rheumatology (OMERACT) core set of outcome measures for antineutrophil cytoplasmic antibody–associated vasculitis (AAV) by “mapping” them to the ICF.

Methods

The content of the instruments included in the AAV core set were linked to the ICF by 2 independent investigators according to previously established ICF linkage rules.

Results

The AAV core set includes 3 measures of disease activity (3 versions of the Birmingham Vasculitis Activity Score), 1 damage measure (Vasculitis Damage Index), 1 patient-reported outcome (Short Form 36 health survey), and death. Linking these instruments to the ICF revealed comprehensive coverage of the ICF components body functions and body structures, limited coverage of the ICF component activities and participation, and complete absence of coverage of contextual factors.

Conclusion

ICF was found to be useful for thematic characterization of a heterogeneous group of outcome measures for AAV, i.e., a group of complex medical conditions. Linking of the instruments selected for the OMERACT AAV core set of outcome measures to the ICF classification revealed limitations in the representation of constructs related to life impact of AAV, represented by the ICF components activities and participation and contextual factors. Further research and methods development are needed to better incorporate important aspects of functioning and health relevant to patients into clinical trials of AAV.

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