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The International Consortium for Health Outcome Measurement (ICHOM)Set of Outcomes that Matter to People Living with Inflammatory Arthritis Consensus from an international Working Group

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Oude Voshaar MAH1, Das Gupta Z2, Bijlsma JWJ3, Boonen A4, Chau J5, Courvoisier DS6, Curtis JR7, Ellis B8, Ernestam S9, Gossec L10, Hale C11, Hornjeff J12, Leung KYY13, Lidar M14, Mease P15, Michaud K16, Mody GM17, Ndosi M18, Opava CH19, Pinheiro GRC20, Salt M2, Soriano ER21, Taylor WJ22, Voshaar MJH1, Weel AEAM23, de Wit M24, Wulffraat N25, van de Laar MAFJ1,2, Vonkeman HE1,2. Arthritis Care Res (Hoboken). 2018 Oct 24. doi: 10.1002/acr.23799. [Epub ahead of print]

Abstract

Author information 1 University of Twente, Department of Psychology, Health and Technology, Enschede, The Netherlands. 2 International Consortium for Health Outcomes Measurement, London, United Kingdom. 3 University Medical Center Utrecht Utrecht, Department of Rheumatology and Clinical Immunology, Utrecht, The Netherlands. 4 Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Centre, Maastricht, Netherlands. 5 Hong Kong Psoriatic Arthritis Association, Hong Kong, China. 6 University Hospitals of Geneva & University of Geneva, Switzerland. 7 University of Alabama at Birmingham, Birmingham, AL. 8 Imperial College Healthcare NHS Trust. 9 Clinical epidemiological unit, Dept. of Medicin Solna, Karolinska Institute. 10 Sorbonne Université, Paris France; Pitié Salpêtrière hospital, APHP, Rheumatology department, Paris, France. 11 Lockton Dunning Benefits, Dallas. 12 Columbia University Medical Centre. 13 Singapore General Hospital, Duke-NUS Medical School, Singapore. 14 Sheba Medical Centre, Department of internal medicine, Tel-Hashomer, Israel. 15 Providence-St. Joseph Health System, University of Washington, Seattle, WA. 16 University of Nebraska Medical Center Omaha, NE& The National Databank for Rheumatic Diseases,, Wichita, KS. 17 Nelson R Mandela School of Medicine, University of KwaZulu-Natal, South Africa. 18 Department of Nursing and Midwifery, University of the West of England, Bristol, UK. 19 Karolinska Institutet, Dept. pf Neurobiology, Care Sciences and Society, Division of Physiotherapy. 20 Department of Internal Medicine, Division of Rheumatology, Universidade do Estado do Rio de Janeiro, Rio de Janeiro, Brasil. 21 Instituto Universitario Hospital Italiano de Buenos Aires. 22 Department of Medicine, University of Otago, Wellington, New Zealand. 23 Maasstad Hospital, Department of Rheumatology, Rotterdam, The Netherlands. 24 VU University Medical Centre, VU University Medical Centre, Dept. Medical Humanities, Amsterdam Public Health (APH),, Amsterdam, Netherlands. 25 Wilhelmina Children's Hospital, Utrecht, Netherlands.

Abstract

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.