PATIENTS EXPERIENCE OF EPILEPSY AND HEALTH-CARE

Objective. The aim of this study was to assess the severity of epileps y and its effect on patients' lives, and to describe patients' use of and attitudes to health care. Method. A questionnaire was sent to 595 people with epilepsy identified from 14 general practices in north-wes t Bristol. All patients aged 16 years and over receiving anti-epilepti c medication for their epilepsy were included in the study. Areas inve stigated included severity of epilepsy and its effect on quality of li fe, anti-epileptic medication and its perceived effect, health care ut ilization and preferences for health care. Results. Seizure frequency was strongly associated with adverse effects of epilepsy. Attacks of e pilepsy were experienced at least monthly by 20.4% (95% confidence int ervals (CI) 17.0-23.7%) of patients, 29.4% (25.4-33.4%) took more than one anti-epileptic drug, 56.1% (50.1-62.2%) reported drug side effect s, 74.1% (70.3-77.8%) would prefer to receive all or most of their epi lepsy care in a general practice setting, and 69.8% (63.5-76.2%) would like contact with a primary care-based epilepsy specialist nurse. Dur ing the previous year 42.4% (35.9-48.8%) of patients had not seen a do ctor about their epilepsy. Of patients who had attended the general pr actice only 13.4% (9.6-17.2%) had regular arrangements to see their GP about epilepsy. Patients receiving both primary and secondary care ha d the greatest needs and wants for improved care. Conclusions. Structu red care, including regular appointments, co-ordination of primary and secondary care, and increased monitoring and discussion, may improve the quality of life of people with epilepsy, but requires evaluation.