International Consortium for Health Outcome Measurement Set of Outcomes That Matter to People Living With Inflammatory Arthritis: Consensus From an International Working Group
Oude Voshaar, Martijn A H; Das Gupta, Zofia; Bijlsma, Johannes W J; Boonen, Annelies; Chau, Jeffrey; Courvoisier, Delphine S; Curtis, Jeffrey R; Ellis, Benjamin; Ernestam, Sofia; Gossec, Laure; Hale, Christine; Hornjeff, Jennifer; Leung, Katy Y Y; Lidar, Merav; Mease, Phillip; Michaud, Kaleb; Mody, Girish M; Ndosi, Mwidimi; Opava, Christina H; Pinheiro, Geraldo R C; Salt, Matthew; Soriano, Enrique R; Taylor, William J; Voshaar, Maria J H; Weel, Angelique E A M; de Wit, Maarten; Wulffraat, Nico; van de Laar, Mart A F J; Vonkeman, Harald E
(2019) Arthritis care and research, volume 71, issue 12, pp. 1556 - 1565
(Article)
Abstract
Objective: The implementation of value-based health care in inflammatory arthritis requires a standardized set of modifiable outcomes and risk-adjustment variables that is feasible to implement worldwide. Methods: The International Consortium for Health Outcomes Measurement (ICHOM) assembled a multidisciplinary working group that consisted of 24 experts from 6 continents, including 6
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patient representatives, to develop a standard set of outcomes for inflammatory arthritis. The process followed a structured approach, using a modified Delphi process to reach consensus on the following decision areas: conditions covered by the set, outcome domains, outcome measures, and risk-adjustment variables. Consensus in areas 2 to 4 were supported by systematic literature reviews and consultation of experts. Results: The ICHOM Inflammatory Arthritis Standard Set covers patients with rheumatoid arthritis (RA), axial spondyloarthritis, psoriatic arthritis, and juvenile idiopathic arthritis (JIA). We recommend that outcomes regarding pain, fatigue, activity limitations, overall physical and mental health impact, work/school/housework ability and productivity, disease activity, and serious adverse events be collected at least annually. Validated measures for patient-reported outcomes were endorsed and linked to common reporting metrics. Age, sex at birth, education level, smoking status, comorbidities, time since diagnosis, and rheumatoid factor and anti-citrullinated protein antibody lab testing for RA and JIA should be collected as risk-adjustment variables. Conclusion: We present the ICHOM inflammatory arthritis Standard Set of outcomes, which enables health care providers to implement the value-based health care framework and compare outcomes that are important to patients with inflammatory arthritis.
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Keywords: Rheumatology
ISSN: 2151-464X
Publisher: John Wiley and Sons Inc.
Note: © 2018 The Authors Arthritis Care & Research published by Wiley Periodicals, Inc. on behalf of American College of Rheumatology.
(Peer reviewed)