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European research on incapacitating diseases and social support

Objective

- to investigate the functions of social support and social networks for coping with a chronic disease (rheumatoid arthritis (RA) patients). Special attention will be given to the influence of medical treatment in this process and how other intervening variables influence the daily functioning and the quality of life of the persons involved;
- to analyse the interactions between formal and informal care for the chronically ill. The outcomes of these interactions could lead to suggestions for improving the care system;
- to describe and compare the patterns of care that exist for RA patients in Europe and how these pattern may influence 'health outcomes' (survival, functional status, quality of life).

The study will elucidate social, psychological and medical factors contributing to the course of the disease and to the quality of life of people with a chronic illness. After the development of a protocol and a base-line measure in the participating countries now the changes in disease course and its effect on quality of life is longitudinally studied. Instruments have been developed in several countries which require international exchange for standardisation. Besides methodological questions, there is a need for further theoretical specification because of competing hypotheses. Through international, longitudinal comparison the time- and place-bound effects can be accounted for. Formal (health) and informal care systems have great potential for improving the health situation and quality of life of the population, especially of groups at risk. More knowledge, based on research which makes international comparison possible, i.e. which shows the specific influence of different care systems, is necessary to further develop this potential. This proposal is limited to rheumatoid arthritis, because of the high prevalence and impact on the patients life. The theoretical starting point of the 'EURIDISS project' is an adaptation of the so-called 'disease handicap' model. Implied in this model is the conception that personal and social resources affect or intervene in the relationship between disease and behavioural changes and functional status. To study the research questions and hypotheses it is necessary to use a longitudinal design with several measurement points in order to detect the effects and changes over time. Patients will be followed for 3 years after the first measurement (t1). The newly diagnosed cases will be included over a one-year period. Each subject will be followed during at least three years with four measurement points. The number of patients will be 800 diagnosed patients. The diagnostic criteria of the American Rheumatism Association are used for inclusion in order to meet international criteria. The data collection contains a common and obligatory set of variables. They are: person-bound variables, clinical criteria, life events, social support/social network, behavioural changes, perceived health and use of services. Measurement instruments for these variables are available and have been translated and retranslated in all relevant languages. Apart from the instruments the procedures for data collection and data storage have been specified and standardised as far as possible. A specific software programme has been developed.

Coordinator

Rijksuniversiteit Groningen
Address
1,Ant. Deusinglaan
9700 AV Groningen
Netherlands