Exploration, Development, and Validation of Patient-reported Outcomes in Antineutrophil Cytoplasmic Antibody-associated Vasculitis Using the OMERACT Process

The Journal of Rheumatology
Joanna RobsonP A Merkel

Abstract

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 AAV 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. 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 exa...Continue Reading

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Citations

Dec 17, 2017·Rheumatology International·Andrea Hinojosa-AzaolaNatasha Alcocer-Castillejos
Jul 3, 2019·The Journal of Rheumatology·Lucy O'MalleyLorraine Harper
Feb 26, 2016·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Clifton O BinghamRajeev K Sabharwal
Jun 5, 2016·Clinical Journal of the American Society of Nephrology : CJASN·David T SelewskiDebbie S Gipson
Jan 11, 2017·Current Opinion in Rheumatology·Betty Hsiao, Liana Fraenkel

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