Rationale:
Surveillance of pediatric sudden unexpected death in epilepsy (SUDEP) in the United States has largely been based on convenience samples to date; few population-based studies have been performed. The NIH/CDC Sudden Death in the Young (SDY) Case Registry provides an opportunity to explore population-based data on pediatric SUDEP and identify associations that may inform prevention efforts.
Method:
Using data from the SDY Case Registry from 2015 to 2017, we analyzed sudden, unexpected deaths that were categorized as SUDEP or Possible SUDEP/cardiac among residents 0-17 years of age in up to 9 states/jurisdictions. We described demographic characteristics and calculated category-specific mortality rates. Cases were categorized as SUDEP if they had a history of epilepsy, with or without evidence of seizure at the time of death (but excluding status epilepticus). Cases were categorized as Possible Cardiac/SUDEP if they had a history of epilepsy and one or more of the following factors suspicious for a cardiac cause: 1) Family history of a heritable cardiac condition or sudden death before age 50 years; 2) personal history of cardiac disease; or 3) clinical history suggestive of a cardiac cause (e.g., death during exertion).
Results:
There were 1,776 total analyzable cases in the SDY Case Registry from 2015 to 2017, or which 54 (3%) were categorized as SUDEP and 11 (1%) were categorized as Possible Cardiac/SUDEP. Characteristics of these deaths are presented in the Table. Autopsy rates were lower for SUDEP (70%) compared to other categories of death in the Registry (81 - 100%). Of the 47 total cases with an autopsy, 10 (21%) underwent neuropathological consultation. SUDEP was equally as common among males than females.The SUDEP mortality rate was higher among non-whites (0.29/100,000 live births and children) than whites (0.23/100,000 live births and children). SUDEP occurred at all ages, with higher mortality rates noted between ages 0-2 years (0.51/100,000 live births and children) and 14 to 17 years (0.32/100,000 live births and children). Most cases occurred during sleep and were not witnessed.
Conclusion:
The SDY Registry provides important population-based data on SUDEP. Future research could explore the barriers to autopsy in this population and the racial and age-specific differences in SUDEP mortality rates.
Funding:
:The Sudden Death in Young Case Registry is supported by the National Heart, Lung and Blood Institute, the National Institute of Neurological Disorders and Stroke, and the Center for Disease Control and Prevention.
FIGURES
Figure 1