Patients' experience of epilepsy and health care

OBJECTIVE: The aim of this study was to assess the severity of epilepsy andits effect on patients lives, and to describe patients' use of andattitudes to health care. METHOD: A questionnaire was sent to 595 peoplewith epilepsy identified from 14 general practices in north-west Bristol.All patients aged 16 years and over receiving anti-epileptic medication fortheir epilepsy were included in the study. Areas investigated includedseverity of epilepsy and its effect on quality of life, anti-epilepticmedication and its perceived effect, health care utilization andpreferences for health care. RESULTS: Seizure frequency was stronglyassociated with adverse effects of epilepsy. Attacks of epilepsy wereexperienced at least monthly by 20.4% (95% confidence intervals (Cl)17.0-23.7%) of patients, 29.4% (25.4-33.4%) took more than oneanti-epileptic drug, 56.1% (50.1-62.2%) reported drug side effects, 74.1%(70.3-77.8%) would prefer to receive all or most of their epilepsy care ina general practice setting, and 69.8% (63.5- 76.2%) would like contact witha primary care-based epilepsy specialist nurse. During the previous year42.4% (35.9-48.8%) of patients had not seen a doctor about their epilepsy.Of patients who had attended the general practice only 13.4% (9.6-17.2%)had regular arrangements to see their GP about epilepsy. Patients receivingboth primary and secondary care had the greatest needs and wants forimproved care. CONCLUSIONS: Structured care, including regularappointments, co-ordination of primary and secondary care, and increasedmonitoring and discussion, may improve the quality of life of people withepilepsy, but requires evaluation.