Abstracts

Rationale: Patients with epilepsy are 2 to 3 times more likely to die prematurely than the general population, from a number of causes including Sudden Unexpected Death in Epilepsy (SUDEP), associated co-morbidities, accidents and status epilepticus. However, the epidemiology of paediatric epilepsy mortality, especially relating to SUDEP, is poorly defined; existing studies are limited to local case series, and national incidence estimates are lacking.  Methods: We conducted a prospective, population-based active surveillance study using the established British Paediatric Surveillance Unit (BPSU) methodology. The population under study were children aged 0-16 years, resident in the UK and Ireland, who died between November 2016 and November 2017, with a simultaneous diagnosis of epilepsy; defined by presence of seizures or treatment with anti-epileptic drugs (AEDs) within the last 5 years. Results: Over 13 months surveillance, 129 deaths in children with epilepsy were reported. Seventy per cent of cases were male and of white ethnic group. Age at death ranged from 5 months to 16 years and causes of death included pneumonia, sepsis, SUDEP and underlying condition. Fifty- four percent had global developmental delay. In 55% of cases, a general paediatrician or a paediatrician with neurology/epilepsy interest was involved in their care. Thirty-seven percent had a community paediatrician and 35% had a paediatric neurologist involved in their management. Ninety percent of patients were on AEDs at the time of death. The two most prescribed AEDs are sodium valproate and levetiracetam.   Conclusions: Different studies with different cohorts show that SUDEP is responsible for anything between 2%-18% of all deaths in patients with epilepsy. This study will contribute to our understanding of the epidemiology of mortality in epilepsy in children in the UK and Ireland, and help in the design of future studies to evaluate the effectiveness of current public health measures. Funding: This study was funded by SUDEP Action.