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Scientists from 9 European countries, representing 14 university departments and/or university hospitals, are participating in a longitudinal research project called EURIDISS (European Research on Incapacitating Diseases and Social Support). The study elucidates social, psychological and medical factors contributing to the course of the disease and to the quality of life of people with a chronic illness. The study concentrates on rheumatoid arthritis (RA).
The factors included in the study are the degree of activity restrictions, the formal (health care and social security) and informal care system and medical biological and personal characteristics. The outcome measures include survival, quality of life in its physical, psychological and social dimensions, and costs. In each country more than 200 patients will be followed over a 4 year period. Data are collected by medical doctors in the hospital, by trained interviewers at home and by self administered questionnaires.
Complete data sets had been collected on more than 1000 RA patients. At the University of Nancy a computerized data storage programme has been developed and sent to all teams. The analysis of the biomedical data (X rays, rheumatological factor) has started.
The reliability, structure and validity of the instruments is now subject to analysis. It can already be reported, that internationally used instruments seem to be sensitive to cultural variations. However, a reliable and valid core structure can be defined which is suitable for international comparison. This finding is very significant because it indicates that existing international comparisons in the past using these instruments have been undertaken with 'biased' results. Another significant finding is related to the variety of care arrangements, referral patterns and costs involved in the care for RA patients in Europe. The results on care arrangements will be published.
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