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

Published on Dec 1, 2019in Arthritis Care and Research4.056
· DOI :10.1002/ACR.23799
Martijn A. H. Oude Voshaar12
Estimated H-index: 12
(UT: University of Twente),
Zofia Das Gupta1
Estimated H-index: 1
+ 26 AuthorsHarald E. Vonkeman25
Estimated H-index: 25
(UT: University of Twente)
Background The implementation of value based healthcare (VBHC) in inflammatory arthritis (IA) 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, consisting of 24 experts from six continents, including six patient representatives, to develop a Standard Set of outcomes for IA. The process followed a structured approach using a modified Delphi process to reach consensus on 1) conditions covered by the set, 2) outcome domains, 3) outcome measures, 4) risk‐adjustment variables. Consensus on decision areas two to four were supported by systematic literature reviews and consultation of experts. Results The ICHOM IA Standard Set covers patients with rheumatoid arthritis (RA), axial spondyloarthritis, psoriatic arthritis and juvenile idiopathic arthritis (JIA). We recommend that the following outcomes be collected at least annually: pain, fatigue, activity limitations, overall physical and mental health impact, work/school/housework ability and productivity, disease activity, and serious adverse events. Validated measures for patient‐reported outcomes were endorsed, and linked to common reporting metrics. Age, sex at birth, educational 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 IA Standard Set of outcomes that enables healthcare providers to implement the value based healthcare framework and enable comparison of outcomes important to patients with IA.
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