Sudden unexpected death in epilepsy (SUDEP) appears to be significantly more common among infants and children than previously thought, according to new findings presented at the American Epilepsy Society virtual meeting, AES2020.¹ The authors of the study noted that this risk is especially increased among Black and multiracial individuals.

“While SUDEP is traditionally considered a more significant issue in adults, these findings add to the growing research that it is more common in infants and children than we believed, particularly for certain groups,” said lead study author Vicky Whittemore, PhD, program director at the National Institute of Neurological Disorders and Stroke, in a press release.²

“Physicians often don’t discuss SUDEP with parents because they consider it rare and don’t want to frighten them. But it’s important physicians who have young patients discuss the risk with parents,” Dr Whittemore added.²

Dr Whittemore and colleagues arrived at their conclusion after performing an analysis of 2015-2017 data from the SDY Case Registry on sudden, unanticipated deaths that had been deemed due to SUDEP or possible SUDEP/cardiac. Data from residents aged 0 to 17 years in as many as 9 states or jurisdictions were included in the analysis. Categorization took place as follows:

• SUDEP: If the patient had history of epilepsy with or without evidence of seizure upon their death (status epilepticus was excluded)
• Possible SUDEP/cardiac: If the patient had a history of epilepsy, along with at least one of the following:
  • Family history of sudden death prior to age 50 years, or of a heritable cardiac condition
  • Personal cardiac disease history
  • Clinical history that suggests a cardiac cause, such as death during exertion

A total of 1776 cases in the registry were able to be analyzed. The results of the study indicated that 54 (3%) of these cases had been classified as SUDEP, and 11 (1%) had been classified as possible SUDEP/cardiac. SUDEP was found to be equally common among male and female patients. The rate of death due to SUDEP was found to be higher among non-White patients compared with White patients 0.29 vs 0.23 per 100,000 live births and children).

SUDEP was found to occur at all ages, and the highest mortality rates were observed among patients aged 0 to 2 years and 14 to 17 years (0.51 and 0.32 per 100,000 live births and children, respectively). The researchers noted that the majority of SUDEP cases happened during sleep and were not observed.

—Christina Vogt

References:

1. Whittemore V, Burns KM, Udine M, Shaw E, Faulkner M, Tian M. #912949: Population-based surveillance of sudden unexpected death in epilepsy using the Sudden Death in the Young Case Registry. Paper presented at: American Epilepsy Society AES 2020; December 4-8, 2020; Virtual.
2. Sudden unexplained death in epilepsy more common in younger ages than thought. News release. American Epilepsy Society. December 4, 2020. Accessed December 4, 2020.