Illness, experienced health and quality of life in severe epilepsy

Kristina Malmgren, M.D., Ph.D.,

Department of Neurology, Sahlgrenska University Hospital, S-413 45 Göteborg, Sweden (project leader);

Sven Carlsson, Ph. D.,

Department of Psychology, University of Göteborg (assistant project leader)

Helge Malmgren, M.D., Ph.D.,

Department of Philosophy, University of Göteborg (assistant project leader)

When more and more sophisticated technical resources become available for the treatment of an illness it also becomes important to study the interaction between objective and subjective aspects of the illness, to measure the effects of different treatments in terms of experienced health and quality of life, and to scrutinize the instruments which are used to determine the nature and degree of the illness. There is else a risk that the decisions to use technically advanced forms of treatment are based mainly on objective determinable pathological changes, and that the importance of the individualęs subjective experience is downplayed. These problems become very clear when one works with epilepsy surgery.

The present project involves a series of studies of subjective health, quality of life and the importance of psychosocial factors in patients evaluated for epilepsy surgery at Sahlgrenska University Hospital, Göteborg. The research team consists of neurologists, psychologists and philosophers. The following studies are planned:

(1) Theoretical investigations of central concepts such as for example quality of life, subjective illness, coping ability. Ethical analyses of the relevance of these concepts for decisions concerning patients considered for epilepsy surgery.

(2) Analyses of the relevance and usefulness of existing instruments for measuring quality of life, subjective health etc., with the aim of finding optimal instruments for use in patients with severe epilepsy.

(3) Studies of the interaction of somatical and psychological factors in the treatment of epilepsy and in rehabilitation, with the aim of improving existing treatment and rehabilitation programs.

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