ICF Core Set for Rheumatoid Arthritis
Rheumatoid arthritis (RA) is a chronic disabling disease. People with RA may have a shorter life expectancy and disability in RA patients may be serious, affecting people in their most productive years. Thus disability results in a major economic loss. Current recommendations regarding assessment of the disease and disease consequences, for example in trials of anti-rheumatic drugs include the recommendation to measure function mainly referring to physical function. Accordingly, measures of function are increasingly used in RA studies. However, condition-specific measures typically cover only selected aspects of the person's experience with RA. Also, the measures vary quite considerably regarding the concepts included. It would therefore be valuable for teaching purposes, clinical practice and research to define what should be measured to comprehensively represent the experience of persons with RA.
To tackle this issue, the ICF Research Branch and the World Health Organisation (WHO) with the scientific support of Ludwig-Maximilian University (Germany), University of Sao Paulo (Brazil), Brunel University (UK), University of Manchester (UK), Maastricht University and Maastricht University Hospital (both The Netherlands), Bone and Joint Decade, the European League against Rheumatism (EULAR), EU Health Monitor Project Group and OMERACT, initiated a project to develop internationally-accepted and evidence-based ICF Core Sets for RA. This project was part of a larger project examining 12 chronic conditions with a high burden of disease.
The preparatory phase included a systematic literature review, a Delphi exercise and an empirical data collection using the ICF checklist:
- The systematic literature review was performed to identify and compare the concepts contained in outcome measures of randomized, controlled clinical trials published from 1991-2000 involving patients with RA.
- The international expert survey (via email) using the Delphi technique was conducted with 22 health professionals, experts on the treatment of persons with RA, to identify the set of domains that best describe the prototypical spectrum of problems in functioning and health in persons with RA from the of health professional perspective.
- The multicentre cross-sectional study using the ICF checklist with a convenient sample of 37 patients undergoing inpatient or outpatient rehabilitation was performed to identify the common problems experienced by persons with RA.
An international ICF consensus conference took place from 26-29 April 2002 at a quiet monastery situated in a pleasant landscape far from any city and distractions. The aim of the conference was to establish the Comprehensive and Brief ICF Core Sets for patients with RA. Seventeen experts (physiatrists, rheumatologists, nurse, occupational therapist, and physiotherapist) from 12 different countries decided which ICF categories are to be included in the ICF Core Sets for RA following a formal, decision-making and consensus process which integrated the results from the 3 preparatory studies.
96 ICF categories were selected for inclusion in the Comprehensive ICF Core for RA. Out of the 96 Comprehensive ICF Core Set categories, 39 ICF categories were selected as categories for the Brief ICF Core for RA. The Comprehensive ICF Core Set for multidisciplinary assessment and the Brief ICF Core Set as disease specific adaptations of the ICF may be used in the future to facilitate clinicians' and researchers' efforts to incorporate a patient-oriented, multilevel comprehensive view in their everyday practice.
Validation studies have been conducted.
- Comprehensive & Brief ICF Core Sets for RA (download PDF)