Abstracts

Rationale: Mortality rates in children with epilepsy exceed those of the general population. While many deaths may be explained by the underlying cause of seizures or co-morbid conditions, a proportion of deaths in children with epilepsy remain unexplained. Sudden Unexpected Death in Epilepsy (SUDEP) refers to the death of a person with epilepsy that is sudden, unexpected and unexplained. The incidence of SUDEP in adults is estimated to be 1 death per 1000 people with epilepsy per year, with rates approaching 1 per 100 person-years in individuals with drug resistant epilepsy. The incidence of SUDEP in children has not been explored adequately; the limited literature suggests lower rates than in adults, ranging from 0.2 to 0.4 per 1000 person-years. These incidence rates are generally believed to be an underestimate, as it is widely acknowledged that poor awareness of SUDEP among health care practitioners and people with epilepsy result in low case ascertainment. Our aims were to determine whether a knowledge gap regarding SUDEP exists among Canadian pediatricians and to inform strategies for a prospective study of SUDEP among Canadian children. Methods: The Canadian Pediatric Surveillance Program (CPSP), operated by the Canadian Pediatric Society, gathers data from Canadian pediatricians and pediatric subspecialists each month to monitor rare diseases and conditions in Canadian children. These physicians provide health care to over seven million Canadian children and youth. A 10 question paper survey was administered to all 2570 pediatricians enrolled in the CPSP. Content validity was completed through literature review and serial revisions achieving agreement about each questionnaire component. Variables collected included experience providing care to children with epilepsy, knowledge of mortality risk among children with epilepsy and knowledge of SUDEP. Descriptive statistics were calculated. Results: The survey response rate was 34% (866/2570). Of the respondents, 78% (674) reported that they had cared for children with epilepsy in the preceding 24 months. Among these pediatricians, only 56 % (380) had prior knowledge that children with epilepsy are at an increased risk of sudden unexplained death compared to children without epilepsy. Only 33% (225) of pediatricians caring for children with epilepsy were aware of the term SUDEP. Fourteen pediatricians reported knowledge of a case of SUDEP. Of the 11 cases for which details of the death investigation process were reported, five children (45%) did not undergo autopsy, suggesting inadequate investigation of deaths in children with epilepsy. Survey methodology does not permit accurate incidence calculations. Conclusions: This survey identifies poor awareness of SUDEP among Canadian pediatricians, despite the finding that greater than 75% report providing care for children with epilepsy. The study highlights the need for educational initiatives to support future studies involving SUDEP case collection. Accurate incidence data will require prospective surveillance of SUDEP in children.