The reliable measurement of temporal trends in mortality attributed to epilepsy and status epilepticus in Northern Ireland between 2001-2015.

PURPOSE: Epilepsy mortality is of considerable public health concern, as a leading cause of premature neurological death. Recent English and Welsh mortality data suggests a falling mortality rate where epilepsy was the underlying cause of death, predominantly due to a reduction in status epilepticus (SE) mortality. We sought to validate this finding in Northern Ireland.

METHODS: Officially recorded death certificate data related to epilepsy and SE were obtained from the Northern Ireland statistics and research agency. Data were analysed from 2001 to 2015. The outcomes were the age-adjusted mortality rate for epilepsy and SE. External validation of SE deaths was carried out using data from an intensive care national audit and research centre database.

RESULTS: From 2001 until end of 2015, epilepsy was recorded at death certification in 1484 cases. 458 deaths were considered due to epilepsy. Among 75 in whom SE was recorded, SE was the cause of death in 46 patients. External validation found 103 total deaths related to SE in ICU departments in Northern Ireland, suggesting an overall under-ascertainment of officially recorded statistics. With respect to the 2013 European Standard Population, the mean age-adjusted mortality rate for epilepsy was 1.9 (95% C.I. 1.73-2.07) per 100,000 person years. For SE the mean age-adjusted mortality rate was 2.1 (95% C.I. 0.15-0.27) per 100,000 person years.

CONCLUSIONS: Death certification in SE is likely to be an underestimate of the reality. Further efforts are urgently needed to determine the extent of SE-related deaths and all deaths in patients with epilepsy.