Sudden unexpected death in epilepsy

The Canadian health care environment represents a unique opportunity to capture data on SUDEP in children; however, it is well recognized that only a small subset of children with epilepsy receive care from a paediatric neurologist. Dr. Jette, a coinvestigator on this project, is currently leading a study examining the health care utilization of 26,000 people with epilepsy in Alberta. Dr. Jette has demonstrated that only 15% of children under 18 years of age were evaluated every two years by a neurologist or neurosurgeon, and 53% of these children had never been evaluated by a subspecialist in neurology care (ongoing study; unpublished data). This data is supported by a recent report for Health Quality Ontario, which determined that only 3.75% of adults and children with drug-resistant epilepsy were assessed by specialized neurology centres. 2 Given that drug-resistant epilepsy is a risk factor for SUDEP, this data suggests that children at risk of SUDEP are not routinely followed by subspecialist paediatric neurologists. 3