Bell, G.S.; (2006) Provision of care to people with epilepsy: standards and mortality. Doctoral thesis , University of London.

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Abstract

Background: Audits of service provision for people with epilepsy in the UK have shown care to be substandard. People with epilepsy may die prematurely, and substandard care may contribute to this.;Methods: The Chiltern audit is a records audit of people taking anti-epileptic drugs in 12 general practices in Buckinghamshire. The National Sentinel Clinical Audit of Epilepsy-related death is an audit of deaths certified as being epilepsy-related in one year in the UK the primary and specialist care sections were further explored in this thesis. In both audits documented care was compared with published standards. Data from an incident cohort of people with epilepsy were examined to investigate which details predicted inclusion of epilepsy on the death certificate. The standardised mortality ratio (SMR) for epilepsy in England and Wales was calculated from death certificates including epilepsy. A re-analysis of a previously published meta-analysis of suicide in epilepsy was performed.;Results: The primary care audits found evidence of recent epilepsy review in fewer than two thirds of people with epilepsy. These audits suffered from lack of evidence in the clinical records. The overall standard of specialist care was adequate in under half, but there was no evidence of different standards of care in people with and without learning disability. Epilepsy is indicated in seven percent of death certificates of people with epilepsy, confirming that they do not provide appropriate case ascertainment for studying death in people with epilepsy. The investigation of suicide in England and Wales shows that they are similarly unsuitable for investigating deaths from suicide in people with epilepsy. The SMR for suicide in epilepsy is significantly increased.;Conclusion: Poor record keeping hampers assessment of care by audit. Epilepsy care may often be substandard, but death as outcome is far removed from delivery of care other outcomes are considered.

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