Investigative practice into sudden death in epilepsy: A global survey

Abstract

Objectives

Sudden death is a recognised consequence of epilepsy. Little is known about the practice of confirming the cause of sudden death from most nations. We sought to determine how often autopsy is undertaken, clinician confidence in cause of death, and identify the factors which may influence autopsy utilization.

Materials & Methods

An online questionnaire survey was sent to all International League Against Epilepsy (ILAE) chapters chairpersons, asking them to complete the survey based on their perceptions in their country. Questions included: confidence in cause of death in people with epilepsy, frequency of autopsy uptake, and perceived barriers to an accurate diagnosis and ongoing research work. Data was analysed by chi squared, Kruskal‐Wallis and Spearman rank analysis.

Results

Responses were obtained from 77 of 114 individual chapter leaders (68%). Legal, coronial, family attitudes, including cultural and religious factors, to autopsy were considered the major barriers to obtaining an accurate diagnosis. Only 13% had a high level of confidence in the accuracy of the cause of death. There was greater confidence in the diagnosis of the causes of sudden death in epilepsy in the countries with higher autopsy rates. Sixty‐six percent of responders were not aware of published or unpublished research or audits on sudden death in epilepsy in their country in the last decade.

Conclusions

Significant disparities exist in the investigation of sudden death in epilepsy across countries and identified factors in this study provide an opportunity to formulate a global public health strategy to help overcome this gap.

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