Sudden unexpected death in epilepsy (SUDEP) in New Zealand; a retrospective review.

ABSTRACT

AIM: Sudden unexpected death in epilepsy (SUDEP) is well recognised and widely reported but remains poorly understood. SUDEP in young adults is 27 times more common than sudden death in control populations. The incidence of SUDEP in New Zealand is not known but up to 40 people with epilepsy may die from SUDEP every year. A review of coroner's reports of SUDEP was undertaken to learn more about SUDEP in New Zealand. METHOD: Coroner's reports of all cases of possible SUDEP in New Zealand from 2007-2016 (n=190) were obtained and post-mortem and toxicology results were reviewed. Cases were categorised using published criteria. RESULTS: We obtained reports of 190 cases from the coroner's office. Of these 190 cases, we determined that 123 were definite SUDEP, 40 were definite SUDEP plus, three were probable SUDEP, seven were possible SUDEP and 17 were probably not SUDEP. The number of cases per year varied from 11-26 (2013). Cases were aged 1.5-67 years, with 63% aged 15-45 (mean 37 years). Sixty-one percent were male. Eighty-seven percent of the deaths occurred at home, with 74% found dead in their bed or bedroom. The majority were not employed, with only 33% working or retired at the time of death; 15% were children or students. Information regarding work status was not available for 11%. Toxicology results were available for 155 cases; antiepileptic drug (AED) use was detected in 67% of these cases, with a single AED detected in 44%, two AEDs in 21%, and three AEDs in 3% of samples taken at autopsy. Approximately half who took an AED were taking either sodium valproate or carbamazepine. CONCLUSION: This study suggests that people with epilepsy who die from SUDEP in New Zealand are young and are often compliant with their medication. We plan to establish a nationwide SUDEP registry using the EpiNet database to determine the incidence of SUDEP in New Zealand, and to track changes in SUDEP rates. We are also planning to take part in an international case-control study of SUDEP in the hope that we might learn more about risk factors that predispose people with epilepsy to SUDEP, and factors that might reduce the risk.