Skip to main content

Research Repository

Advanced Search

Exploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT process

Robson, Joanna C.; Milman, Nataliya; Tomasson, Gunnar; Dawson, Jill; Cronholm, Peter F.; Kellom, Katherine; Shea, Judy; Ashdown, Susan; Boers, Maarten; Boonen, Annelies; Casey, George C.; Farrar, John T.; Gebhart, Don; Krischer, Jeffrey; Lanier, Georgia; McAlear, Carol A.; Peck, Jacqueline; Sreih, Antoine G.; Tugwell, Peter S.; Luqmani, Raashid A.; Merkel, Peter A.

Authors

Jo Robson Jo.Robson@uwe.ac.uk
Consultant Associate Professor in Rheumatology

Nataliya Milman

Gunnar Tomasson

Jill Dawson

Peter F. Cronholm

Katherine Kellom

Judy Shea

Susan Ashdown

Maarten Boers

Annelies Boonen

George C. Casey

John T. Farrar

Don Gebhart

Jeffrey Krischer

Georgia Lanier

Carol A. McAlear

Jacqueline Peck

Antoine G. Sreih

Peter S. Tugwell

Raashid A. Luqmani

Peter A. Merkel



Abstract

The Journal of Rheumatology Copyright © 2015. All rights reserved. Objective. Antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) is a group of linked multisystem life- and organ-threatening diseases. The Outcome Measures in Rheumatology (OMERACT) vasculitis working group has been at the forefront of outcome development in the field and has achieved OMERACT endorsement of a core set of outcomes for AAV. Patients with AAV report as important some manifestations of disease not routinely collected through physician-completed outcome tools; and they rate common manifestations differently from investigators. The core set includes the domain of patient-reported outcomes (PRO). However, PRO currently used in clinical trials of A AV do not fully characterize patients' perspectives on their burden of disease. The OMERACT vasculitis working group is addressing the unmet needs for PRO in AAV. Methods. Current activities of the working group include (1) evaluating the feasibility and construct validity of instruments within the PROMIS (Patient-Reported Outcome Measurement Information System) to record components of the disease experience among patients with AAV; (2) creating a disease-specific PRO measure for AAV; and (3) applying The International Classification of Functioning, Disability and Health to examine the scope of outcome measures used in AAV. Results. The working group has developed a comprehensive research strategy, organized an investigative team, included patient research partners, obtained peer-reviewed funding, and is using a considerable research infrastructure to complete these interrelated projects to develop evidence-based validated outcome instruments that meet the OMERACT filter of truth, discrimination, and feasibility. Conclusion. The OMERACT vasculitis working group is on schedule to achieve its goals of developing validated PRO for use in clinical trials of AAV.

Citation

Robson, J. C., Milman, N., Tomasson, G., Dawson, J., Cronholm, P. F., Kellom, K., …Merkel, P. A. (2015). Exploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT process. Journal of Rheumatology, 42(11), 2204-2209. https://doi.org/10.3899/jrheum.141143

Journal Article Type Article
Acceptance Date Nov 1, 2015
Publication Date Nov 1, 2015
Deposit Date Jul 1, 2019
Publicly Available Date Mar 28, 2024
Journal Journal of Rheumatology
Print ISSN 0315-162X
Electronic ISSN 1499-2752
Publisher Journal of Rheumatology
Peer Reviewed Peer Reviewed
Volume 42
Issue 11
Pages 2204-2209
DOI https://doi.org/10.3899/jrheum.141143
Public URL https://uwe-repository.worktribe.com/output/1467081
Publisher URL https://doi.org/10.3899/jrheum.141143