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.