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

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 multidi...

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Published inArthritis care & research (2010) Vol. 71; no. 12; pp. 1556 - 1565
Main Authors 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., Wit, Maarten, Wulffraat, Nico, Laar, Mart A. F. J., Vonkeman, Harald E.
Format Journal Article
LanguageEnglish
Published United States Wiley Subscription Services, Inc 01.12.2019
John Wiley and Sons Inc
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Summary: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.
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Supported by Arthritis Research UK, the Karolinska Institutet, Maasstad Hospital, Santeon, Sheba Academic Medical Center Hospital, and Transparency in Healthcare.
Dr. Bijlsma has received consulting fees from AbbVie, Bristol‐Myers Squibb, MSD, Pfizer, Roche, SUN, and UCB (less than $10,000 each). Dr. Boonen has received honoraria from UCB, Pfizer, Eli Lilly, and Novartis (less than $10,000 each) and research support from AbbVie and Friesland Campina. Dr. Courvoisier has received consulting fees from Bristol‐Myers Squibb (less than $10,000). Dr. Curtis has received honoraria from Amgen, Bristol‐Myers Squibb, Corrona, Crescendo, Janssen, Pfizer, AbbVie, UCB, and Celgene (less than $10,000 each) and research support from Amgen, Bristol‐Myers Squibb, Corrona, Crescendo, Janssen, Pfizer, AbbVie, UCB, and Celgene. Dr. Gossec has received consulting fees, speaking fees, and/or honoraria from Abbott, AbbVie, Celegne, Chugai, Janssen, MSD, Novartis, Pfizer, Roche, and UCB (less than $10,000 each). Dr. Leung has received consulting fees, speaking fees, and/or honoraria from Pfizer and Boehringer (less than $10,000 each). Dr. Mease has received consulting fees, speaking fees, and/or honoraria from Bristol‐Myers Squibb, UCB, Celegne, Genentech, SUN, Corrona (less than $10,000 each), AbbVie, Amgen, Janssen, Eli Lilly, Novartis, and Pfizer (more than $10,000 each) and research support from Bristol‐Myers Squibb, UCB, Corrona, Abbvie, Amgen, Janssen, Novartis, and Pfizer. Dr. Michaud has received research support from Pfizer. Dr. Mody has received consulting fees and/or honoraria from GlaxoSmithKline and AstraZeneca (less than $10,000 each). Dr. Ndosi has received speaking fees and/or honoraria from Pfizer (less than $10,000) and research support from Bristol‐Myers Squibb. Dr. Pinheiro has received consulting fees and/or honoraria from AbbVie, AstraZeneca, Bristol‐Myers Squibb, Janssen, Pfizer, Roche, and Sanofi Aventis (less than $10,000 each). Dr. Soriano has received consulting fees, speaking fees, and/or honoraria from AbbVie, Bristol‐Myers Squibb, Pfizer, Janssen, UCB, Roche, and Novartis (less than $10,000 each) and research support from AbbVie, Bristol‐Myers Squibb, Pfizer, Janssen, UCB, Roche, and Novartis. Dr. Weel has received research support from AbbVie, Pfizer, and UCB. Dr. Wulffraat has received speaking fees from Novartis (less than $10,000) and research support from Pfizer, AbbVie, and Sanofi. Dr. van de Laar has received consulting fees, speaking fees, and/or honoraria from Sanofi Genzyme, Pfizer, MSD, Bristol‐Myers Squibb, Janssen‐Cilag, Eli Lilly, Grunenthal (less than $10,000 each) and research support from AbbVie, Pfizer, MSD, Janssen‐Cilag, Eli Lilly, Grunenthal, and Sobi. Dr. Vonkeman has received consulting fees, speaking fees, and/or honoraria from Roche, AbbVie, Celltrion, Sanofi Genzyme, Novartis, Pfizer, MSD, Bristol‐Myers Squibb, and Janssen‐Cilag (less than $10,000 each) and research support from Roche. No other disclosures relevant to this article were reported.
ISSN:2151-464X
2151-4658
2151-4658
DOI:10.1002/acr.23799