Patients' experience of epilepsy and health care |
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Authors: | Mills N; Bachmann M; Harvey I; McGowan M; Hine I |
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Institution: | Department of Social Medicine, University of Bristol, UK. |
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Abstract: | OBJECTIVE: The aim of this study was to assess the severity of epilepsy 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-west Bristol.
All patients aged 16 years and over receiving anti-epileptic medication for
their epilepsy were included in the study. Areas investigated included
severity of epilepsy and its effect on quality of life, anti-epileptic
medication and its perceived effect, health care utilization and
preferences for health care. RESULTS: Seizure frequency was strongly
associated with adverse effects of epilepsy. Attacks of epilepsy were
experienced 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 one
anti-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 in
a general practice setting, and 69.8% (63.5- 76.2%) would like contact with
a primary care-based epilepsy specialist nurse. During the previous year
42.4% (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 receiving
both primary and secondary care had the greatest needs and wants for
improved care. CONCLUSIONS: Structured 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.
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