Introduction: In addition to increased morbidity, people with epilepsy are significantly more likely to die early than the general population. Causes range from associated comorbidities to Sudden Unexpected Death in Epilepsy (SUDEP). However, the epidemiology of paediatric epilepsy mortality, especially SUDEP, is poorly defined; existing studies are limited to case series, and national incidence estimates are lacking.

Methods: This was a prospective, population-based active surveillance study using the established British Paediatric Surveillance Unit methodology. The population under study were children aged under 16 years in the UK and Ireland, who died between November 2016 and November 2017, with a simultaneous diagnosis of epilepsy.

Results: Over 13 months surveillance, 129 deaths in children with epilepsy were reported. 70% of cases were male and of white ethnicity. Age at death ranged from 5 months to 16 years and causes of death included pneumonia, sepsis, SUDEP and underlying genetic condition. 54% had global developmental delay. In 55% of cases, a general paediatrician or a paediatrician with neurology interest was the primary car provider whilst 35% had a paediatric neurologist. 90%of patients were on AEDs at the time of death. The two most prescribed AEDs were sodium valproate and levetiracetam.

Conclusions: In this study, SUDEP contributed to approximately 10% of deaths, consistent with previous reports in the literature. There is a clear need to better understand and reduce the number of epilepsy deaths in children in the UK, and national surveillance of SUDEP is warranted to better understand this entity in the paediatic population.