[Fears, knowledge, and need of counseling for women with epilepsy. Results of an outpatient study].

BACKGROUND: Women with epilepsy are particularly affected by their condition and need therefore specific counseling and comprehensive information about issues related to contraception, pregnancy, hormone effects on seizure control, bone mineral density, etc. The primary aim of this study was to investigate the knowledge of women with epilepsy about their condition and their need for information and counseling.

METHODS: A total of 365 women with epilepsy aged from 16 to 75 years of age took part in this prospective, cross-sectional study. All were treated by neurologists in private practice or outpatient clinics. The physicians distributed anonymous questionnaires to the women, who mailed them unsigned to the Society for Epilepsy Research. Sociodemographic and epilepsy-specific data of the women, their experiences and fears regarding partnership, family planning, pregnancy, care of children, and their self-rated and actual knowledge were assessed.

RESULTS: Most women (80.9%) lived together with partners, and about half of the women (44.9%) had children. The majority of those with children were greatly worried during pregnancy about risks to their newborn child. They were afraid of potential handicaps (57.9%) and potential epileptic seizures of the child (52.5%) because of their own epilepsy or antiepileptic drugs. Another 39.0% had had great reservations about becoming pregnant. About every fifth woman (18.2%) stopped or reduced antiepileptic medication during pregnancy without consulting her doctor. Women who consciously abstained from having own children (n=87, 23.8%) often reported epilepsy-related reasons (e.g. risk of malformation caused by antiepileptic drugs, 40.8%). Epilepsy also affects the mother-child relationship. For example 40.8% of the women were worried that the child could be harmed during a mother's seizure and 36% reported that their seizures would frighten their children. About 56-66% of the epileptic women stated that they were well to very well informed about topics on contraception, pregnancy, prophylaxis of malformations, and heredity of epilepsies. The knowledge questionnaires revealed however considerable knowledge deficits. These were especially widespread concerning older women and epilepsy, e.g. antiepileptic drugs and osteoporosis, and more pronounced in older women (>50 years) and those with low school education. In all, self-rated and actual knowledge correlated only slightly (r=0.25). Of the women, 60% preferred personal counseling by their physicians. However, especially younger women wanted further information, primarily easy-to-understand brochures (32%) and educational courses (31%).

CONCLUSION: Our results are in accordance with other studies from Great Britain and the U.S. They confirm that women with epilepsy have considerable deficits in epilepsy-specific knowledge and a great need of counselling and information.