National general practice study of epilepsy: The social and psychological effects of a recent diagnosis of epilepsy

Abstract

Objectives - To determine the nature and extent of psychosocial problems in epilepsy and their associations. Design - A postal survey was used drawing data from prospective consecutive cases. Data on demographic, medical, and social backgrounds were collected. A specially designed, validated attitude questionnaire examined 14 areas of psychosocial adjustment to epilepsy. Setting - 124 primary care general practices. Subjects - Adults (aged over 17) with a recent diagnosis of epilepsy (within previous 36 months). They were registered with the national general practice study of epilepsy and had a confirmed diagnosis according to the usual criteria. 216 subjects were approached for the survey by their general practitioners; 192 returned questionnaires. Results - Problems in at least one area were experienced by 175 (91%) of the 192 subjects. Problems were generally mild, which contrasts strongly with findings in chronic cases. The areas of greatest concern were fear of seizures (80% of cases; 72% moderate or severe) and fear of stigma in employment (69% of cases; 40% moderate or severe). A highly significant relation was found between psychosocial effects and the frequency and recency of seizures. Conclusions - In the early stages of epilepsy psychosocial effects are closely related to the severity of the medical condition, suggesting that the argument for the stigmatising effect of the diagnosis by itself is less important than previously thought. The findings also suggest that problems may evolve as the condition becomes chronic.