Epilepsy and seizure-related deaths: Mortality statistics do not tell the complete story

The objective of the study was to identify where epilepsy or seizures may be the underlying cause of death but not identified by the death certification process in the Australian coronial system and to better characterize such deaths.

Australian National Coronial Information System (NCIS) closed cases for the Australian Capital Territory (ACT) (population average 348,000) over 13 years were searched using cause of death, and a text search of police and autopsy reports, to identify all deaths where epilepsy or seizures were mentioned. Deaths where the underlying cause of death was not seizures or epilepsy were excluded (including suicide). The remaining cases (75) were categorized by the circumstances of death. Suspected sudden unexpected death in epilepsy (SUDEP) cases were further classified using the unified definition of SUDEP of Nashef and colleagues (2012).

Of the final 75 cases, only 44 were found by the cause of death search. Key word document searches found another 31. Cases were classified as Definite SUDEP (37), Definite SUDEP Plus (10), Probable SUDEP (1), Possible SUDEP (3), Near SUDEP (4), Near SUDEP Plus (1), Asphyxia (3), Treatment-related (1), Head injury (2), Drowning (2), motor vehicle accident (MVA) (1), deaths related to a single convulsive seizure (6), and status epilepticus (SE) (4). Cases were 80% male.

Epilepsy and seizure-related deaths are underreported in the Australian Coronial system. Enhanced documentation of the causal chain of events leading to deaths would increase recognition. Using the unified SUDEP definition would expand SUDEP identification.