Skip to main content

Main menu

  • Home
  • Content
    • First Release
    • Current
    • Archives
    • Collections
    • AV Rheum
  • Resources
    • Guide for Authors
    • Submit Manuscript
    • Author Payment
    • Reviewers
    • Advertisers
    • Classified Ads
    • Reprints and Translations
    • Permissions
    • Meetings
    • FAQ
    • Policies
  • Subscribers
    • Subscription Information
    • Purchase Subscription
    • Your Account
    • Terms and Conditions
  • About Us
    • About Us
    • Editorial Board
    • Letter from the Editor
    • Duncan A. Gordon Award
    • Accessibility
  • Contact Us
  • JRheum Supplements
  • Services

User menu

  • My Cart
  • Log In

Search

  • Advanced search
The Journal of Rheumatology
  • JRheum Supplements
  • Services
  • My Cart
  • Log In
The Journal of Rheumatology

Advanced Search

  • Home
  • Content
    • First Release
    • Current
    • Archives
    • Collections
    • AV Rheum
  • Resources
    • Guide for Authors
    • Submit Manuscript
    • Author Payment
    • Reviewers
    • Advertisers
    • Classified Ads
    • Reprints and Translations
    • Permissions
    • Meetings
    • FAQ
    • Policies
  • Subscribers
    • Subscription Information
    • Purchase Subscription
    • Your Account
    • Terms and Conditions
  • About Us
    • About Us
    • Editorial Board
    • Letter from the Editor
    • Duncan A. Gordon Award
    • Accessibility
  • Contact Us
  • Follow jrheum on Twitter
  • Visit jrheum on Facebook
  • Follow jrheum on LinkedIn
  • Follow jrheum on RSS
Research ArticleWorkshops and Special Sessions

OMERACT Endorsement of Patient-reported Outcome Instruments in Antineutrophil Cytoplasmic Antibody–associated Vasculitis

Joanna C. Robson, Gunnar Tomasson, Nataliya Milman, Sue Ashdown, Annelies Boonen, George C. Casey, Peter F. Cronholm, David Cuthbertson, Jill Dawson, Haner Direskeneli, Ebony Easley, Tanaz A. Kermani, John T. Farrar, Don Gebhart, Georgia Lanier, Raashid A. Luqmani, Alfred Mahr, Carol A. McAlear, Jacqueline Peck, Beverley Shea, Judy A. Shea, Antoine G. Sreih, Peter S. Tugwell and Peter A. Merkel
The Journal of Rheumatology October 2017, 44 (10) 1529-1535; DOI: https://doi.org/10.3899/jrheum.161139
Joanna C. Robson
From the University of the West of England; University of Bristol; University Hospitals Bristol UK National Health Service (NHS) Trust, Bristol; Nuffield Department of Population Health, University of Oxford; Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Division of Rheumatology, University of Ottawa; Division of Rheumatology, The Ottawa Hospital; Department of Clinical Epidemiology, Ottawa Hospital Research Institute; Ottawa Hospital Research Institute, School of Epidemiology, Public Health and Preventative Medicine, Faculty of Medicine, University of Ottawa; Department of Medicine, Faculty of Medicine, University of Ottawa; Ottawa Hospital Research Institute, Clinical Epidemiology Program, Ottawa, Ontario, Canada; Division of Rheumatology, Maastricht University Medical Centre; Caphri Graduate School, Maastricht, the Netherlands; Vasculitis Foundation, Denver, Colorado; Department of Family Medicine and Community Health, University of Pennsylvania; Epidemiology, Neurology, and Anesthesiology, Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania; Department of Medicine, University of Pennsylvania; Clinical Medicine, Division of Rheumatology, University of Pennsylvania; Medicine and Epidemiology, Division of Rheumatology, Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania; Division of Biostatistics and Informatics, Department of Pediatrics, University of South Florida, Tampa, Florida; Division of Rheumatology, Department of Medicine, University of California, Los Angeles, USA; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Medicine, Hopital Saint Louis, Paris, France.
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Gunnar Tomasson
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Nataliya Milman
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Sue Ashdown
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Annelies Boonen
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
George C. Casey
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Peter F. Cronholm
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
David Cuthbertson
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Jill Dawson
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Haner Direskeneli
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Ebony Easley
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Tanaz A. Kermani
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
John T. Farrar
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Don Gebhart
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Georgia Lanier
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Raashid A. Luqmani
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Alfred Mahr
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Carol A. McAlear
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Jacqueline Peck
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Beverley Shea
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Judy A. Shea
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Antoine G. Sreih
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Peter S. Tugwell
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Peter A. Merkel
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • For correspondence: pmerkel@upenn.edu
  • Article
  • Figures & Data
  • References
  • Info & Metrics
  • PDF
  • eLetters
PreviousNext
Loading

Abstract

Objective. The antineutrophil cytoplasmic antibody–associated vasculitides (AAV) are multiorgan diseases. Patients with AAV report impairment in their health-related quality of life (HRQOL) and have different priorities regarding disease assessment compared with physicians. The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group previously received endorsement for a core set of domains in AAV. Two approaches to measure patient-reported outcomes (PRO) were presented at OMERACT 2016.

Methods. A novel 5-step tool was used to facilitate assessment of the instruments by delegates: the OMERACT Filter 2.0 Instrument Selection Algorithm, with a red-amber-green checklist of questions, including (1) good match with domain (face and content validity), (2) feasibility, (3) do numeric scores make sense (construct validity)?, (4) overall ratings of discrimination, and (5) can individual thresholds of meaning be defined? Delegates gave an overall endorsement. Three generic Patient-Reported Outcomes Measurement Information System (PROMIS) instruments (fatigue, physical functioning, and pain interference) and a disease-specific PRO, the AAV-PRO (6 domains related to symptoms and HRQOL), were presented.

Results. OMERACT delegates endorsed the use of the PROMIS instruments for fatigue, physical functioning, and pain interference (87.6% overall endorsement) and the disease-specific AAV-PRO instrument (89.4% overall endorsement).

Conclusion. The OMERACT Vasculitis Working Group gained endorsement by OMERACT for use of the PROMIS and the AAV-PRO in clinical trials of vasculitis. These instruments are complementary to each other. The PROMIS and the AAV-PRO need further work to assess their utility in longitudinal settings, including their ability to discriminate between treatments of varying efficacy in the setting of a randomized controlled trial.

Key Indexing Terms:
  • ANCA-ASSOCIATED VASCULITIS
  • PATIENT-REPORTED OUTCOMES
  • PROMIS
  • ICF
  • OMERACT

Footnotes

  • Supported through 2 Patient Centered Outcomes Research Institute Awards: Contract Number IP2-PI000603 for Pilot Award and Contract Number PPRN-1306-04758 for the Vasculitis Patient-Powered Research Network (part of the Patient-Centered Outcomes Research Network). The Vasculitis Clinical Research Consortium (VCRC; U54 AR057319, U01 AR5187404, and R01 AR064153) is part of the Rare Diseases Clinical Research Network, an initiative of the Office of Rare Diseases Research, and the US National Center for Advancing Translational Science (NCATS). The VCRC is funded through collaboration between NCATS and the US National Institute of Arthritis and Musculoskeletal and Skin Diseases, and has received funding from the National Center for Research Resources (U54 RR019497). UK funding is from the Medical Research Fund, Oxford, and the Oxfordshire Health Services Research Committee, Oxford. Patient survey support is from Vasculitis UK. Dr. Robson was supported by a UK National Institute for Health Research Academic Clinical Lectureship. Dr. Milman was supported by a UCB/Canadian Rheumatology Association/Arthritis Society postgraduate rheumatology fellowship award and a research fellowship from the Department of Medicine at the Ottawa Hospital.

  • Accepted for publication January 13, 2017.
View Full Text

Log in using your username and password

Forgot your user name or password?

Purchase access

You may purchase access to this article. This will require you to create an account if you don't already have one.
PreviousNext
Back to top

In this issue

The Journal of Rheumatology
Vol. 44, Issue 10
1 Oct 2017
  • Table of Contents
  • Table of Contents (PDF)
  • Index by Author
  • Editorial Board (PDF)
Print
Download PDF
Article Alerts
Sign In to Email Alerts with your Email Address
Email Article

Thank you for your interest in spreading the word about The Journal of Rheumatology.

NOTE: We only request your email address so that the person you are recommending the page to knows that you wanted them to see it, and that it is not junk mail. We do not capture any email address.

Enter multiple addresses on separate lines or separate them with commas.
OMERACT Endorsement of Patient-reported Outcome Instruments in Antineutrophil Cytoplasmic Antibody–associated Vasculitis
(Your Name) has forwarded a page to you from The Journal of Rheumatology
(Your Name) thought you would like to see this page from the The Journal of Rheumatology web site.
Citation Tools
OMERACT Endorsement of Patient-reported Outcome Instruments in Antineutrophil Cytoplasmic Antibody–associated Vasculitis
Joanna C. Robson, Gunnar Tomasson, Nataliya Milman, Sue Ashdown, Annelies Boonen, George C. Casey, Peter F. Cronholm, David Cuthbertson, Jill Dawson, Haner Direskeneli, Ebony Easley, Tanaz A. Kermani, John T. Farrar, Don Gebhart, Georgia Lanier, Raashid A. Luqmani, Alfred Mahr, Carol A. McAlear, Jacqueline Peck, Beverley Shea, Judy A. Shea, Antoine G. Sreih, Peter S. Tugwell, Peter A. Merkel
The Journal of Rheumatology Oct 2017, 44 (10) 1529-1535; DOI: 10.3899/jrheum.161139

Citation Manager Formats

  • BibTeX
  • Bookends
  • EasyBib
  • EndNote (tagged)
  • EndNote 8 (xml)
  • Medlars
  • Mendeley
  • Papers
  • RefWorks Tagged
  • Ref Manager
  • RIS
  • Zotero

 Request Permissions

Share
OMERACT Endorsement of Patient-reported Outcome Instruments in Antineutrophil Cytoplasmic Antibody–associated Vasculitis
Joanna C. Robson, Gunnar Tomasson, Nataliya Milman, Sue Ashdown, Annelies Boonen, George C. Casey, Peter F. Cronholm, David Cuthbertson, Jill Dawson, Haner Direskeneli, Ebony Easley, Tanaz A. Kermani, John T. Farrar, Don Gebhart, Georgia Lanier, Raashid A. Luqmani, Alfred Mahr, Carol A. McAlear, Jacqueline Peck, Beverley Shea, Judy A. Shea, Antoine G. Sreih, Peter S. Tugwell, Peter A. Merkel
The Journal of Rheumatology Oct 2017, 44 (10) 1529-1535; DOI: 10.3899/jrheum.161139
del.icio.us logo Digg logo Reddit logo Twitter logo CiteULike logo Facebook logo Google logo Mendeley logo
  • Tweet Widget
  • Facebook Like
  • Google Plus One
Save to my folders

Jump to section

  • Article
    • Abstract
    • PROMIS Instruments for Fatigue, Physical Functioning, and Pain Interference in AAV
    • The Disease-specific AAV-PRO
    • ICF in AAV
    • Summary
    • Acknowledgment
    • Footnotes
    • REFERENCES
  • Figures & Data
  • References
  • Info & Metrics
  • PDF
  • eLetters

Keywords

ANCA-ASSOCIATED VASCULITIS
PATIENT-REPORTED OUTCOMES
PROMIS
ICF
OMERACT

Related Articles

Cited By...

More in this TOC Section

  • PsAID12 Provisionally Endorsed at OMERACT 2018 as Core Outcome Measure to Assess Psoriatic Arthritis-specific Health-related Quality of Life in Clinical Trials
  • Instrument Selection Using the OMERACT Filter 2.1: The OMERACT Methodology
  • The OMERACT Core Domain Set for Clinical Trials of Shoulder Disorders
Show more Workshops and Special Sessions

Similar Articles

Keywords

  • ANCA-ASSOCIATED VASCULITIS
  • PATIENT-REPORTED OUTCOMES
  • PROMIS
  • ICF
  • OMERACT

Content

  • First Release
  • Current
  • Archives
  • Collections
  • AV Rheum

Resources

  • Guide for Authors
  • Submit Manuscript
  • Author Payment
  • Reviewers
  • Advertisers
  • Classified Ads
  • Reprints and Translations
  • Permissions
  • Meetings
  • FAQ
  • Policies

Subscribers

  • Subscription Information
  • Purchase Subscription
  • Your Account
  • Terms and Conditions

More

  • About Us
  • Contact Us
  • My Alerts
  • My Folders
  • RSS Feeds
The Journal of Rheumatology
The content of this site is intended for health care professionals.
Copyright © 2016 by The Journal of Rheumatology Publishing Co. Ltd.
Print ISSN: 0315-162X; Online ISSN: 1499-2752
Powered by HighWire