International Consortium for Health Outcome Measurement Set of Outcomes That Matter to People Living With Inflammatory Arthritis: Consensus From an International Working Group

Martijn A.H. Oude Voshaar*, Zofia Das Gupta, Johannes W.J. Bijlsma, Annelies Boonen, Jeffrey Chau, Delphine S. Courvoisier, Jeffrey R. Curtis, Benjamin Ellis, Sofia Ernestam, Laure Gossec, Christine Hale, Jennifer Hornjeff, Katy Y.Y. Leung, Merav Lidar, Phillip Mease, Kaleb Michaud, Girish M. Mody, Mwidimi Ndosi, Christina H. Opava, Geraldo R.C. PinheiroMatthew Salt, Enrique R. Soriano, William J. Taylor, Angelique E.A.M. Weel, Maarten de Wit, Nico Wulffraat, Mart A.F.J. van de Laar, Harald E. Vonkeman

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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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 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.

Original languageEnglish
Pages (from-to)1556-1565
Number of pages10
JournalArthritis Care and Research
Volume71
Issue number12
DOIs
Publication statusPublished - 1 Dec 2019

Keywords

  • UT-Hybrid-D

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