Abstracts

Rationale: Hospital-based studies report increased long-term morbidity and mortality following childhood convulsive status epilepticus (CSE), but there is limited population-based data on the outcomes of CSE. Our group carried out the first prospective pediatric population-based study on CSE, the north London convulsive status epilepticus in childhood surveillance study (NLSTEPSS). Our current study aims to examine the medical, cognitive and behavioural outcomes, 5-10 years after an episode of CSE and in this report, we present preliminary mortality data. Methods: From NLSTEPSS we have detailed contemporaneous sociodemographic and clinical data on all cohort members. In the current study, 219 cohort members who survived beyond 30 days of their CSE were identified using unique patient identification numbers. Survival status was determined from hospital and national databases. In the deceased children, clinical details on cause of death were obtained from hospital records. Results: 170 (77%) have been enrolled. Median age at CSE was 3.6 years (range 0.17-16) and median follow-up was 7.1 years (range 0.1-8). Thirteen children have died (0.08, 95% CI 0.05-0.13). The median age at death was 8.5 years (range 1.1-16.8). The etiology of CSE was remote symptomatic in 11 and cryptogenic in 2. The mortality rate was 1/100 person-years (95% CI 0.5-1.7) overall, and 2.3/100 person-years (95% CI 1.4-3.8) for remote symptomatic CSE. Most deaths were attributed to complication of the underlying etiology of CSE. Seven died as a result of aspiration pneumonia; one each had intestinal perforation, refractory status epilepticus and probable sudden unexpected death in epilepsy; and the causes of death are yet to be confirmed in three. Conclusions: A substantial proportion of children will die within 5-10 years following CSE, with underlying aetiology of CSE being the most important determinant.