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OP0329-HPR Outcomes that matter to people living with inflammatory arthritis; a global standard set, developed by the international consortium for health outcome measurement (ICHOM) working group for inflammatory arthritis
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  1. M. Oude Voshaar1,
  2. Z. Das Gupta2,
  3. M.A. Van de Laar1,3,
  4. H.E. Vonkeman1,3,
  5. on behalf of International Consortium for Health Outcome Measurement (ICHOM) Working Group for Inflammatory Arthritis
  1. 1Psychology, Health and Technology and Arthritis center Twente, University of Twente, Enschede, Netherlands
  2. 2International Consortium for Health Outcomes Measurement, London, UK
  3. 3Department of Rheumatology and Clinical Immunology, Medisch Spectrum Twente, Enschede, Netherlands

Abstract

Background Value-based health care (VBHC) is a framework for improving efficiency of healthcare in which competition on value for patients is the central concept. Public reporting of patient outcomes by healthcare providers is proposed as a mechanism that will accelerate identification and adoption of innovations that increase value, through shared learning and sparking competition on outcomes that matter to patients. A key barrier to the implementation of VBHC in inflammatory arthritis (IA) is the absence of a universally accepted set of patient outcomes and risk adjustment variables that are appropriate and feasible to implement in different healthcare systems worldwide.

Methods The International Consortium for Health Outcomes Measurement (ICHOM) assembled a multidisciplinary international working group (WG), consisting of 24 experts, including six patient representatives, to develop a standard set of patient-centred outcomes for IA. The process followed a structured approach using a modified Delphi process to reach consensus on 1) medical conditions to be covered by the set, 2) outcome domains, 3) outcome measures, 4) case mix variables and – definitions. Each step was supported by systematic literature reviews and consultation of (external) experts on the topic under consideration.

Results The WG decided to include rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and juvenile idiopathic arthritis in the IA Standard Set. Twenty-four outcome domains were initially identified in the 130 randomised trial reports and 28 qualitative studies that were found in the systematic literature reviews. Ultimately, pain, fatigue, activity limitations, overall physical and mental wellbeing, work/school/housework ability and productivity, inflammatory disease activity including therapeutic response (i.e. has the patient achieved the treatment target?), and serious adverse events were included. The measurement properties of 21 patient-reported outcome measures were assessed for all of the included domains. 20 of these were linked to an item response theory-based common reporting metric. This allows users of the ICHOM IA set to choose their preferred instrument while allowing comparison of outcomes. A number of risk adjustment variables and time points for collection were recommended to allow global benchmarking.

Conclusions We present the ICHOM standard set of outcomes for Inflammatory Arthritis, that we encourage providers of care to implement to facilitate global comparison of outcome data and stimulate shared learning.

Disclosure of Interest None declared

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