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The Relationship between Epilepsy and Premature Death in Children

SUDEP Institute flags at Walk memorial
Wednesday, February 4, 2015

Many studies have shown that epilepsy is associated with premature death compared to the general population. This excess mortality is often expressed as a standardized mortality ratio (SMR) – that is, the rate of death among people with epilepsy in a certain age group compared to the known rate of death of the population at large for that age group in the region. 

The highest SMRs in epilepsy are seen among children and young adults - an SMR from 2 to 9, depending on the location of the study. While several studies have found that children with epilepsy die more frequently than the general population, the causes of death and contributing conditions are less well understood.

Possible Contributing Factors for Premature Death in Children with Epilepsy

In a large Centers for Disease Control and Prevention epidemiological study using administrative data from hospitals and clinics as well as vital statistics, Selassie and colleagues identified 13,099 children ages 0 to 18 living with epilepsy in South Carolina between 2000 and 2011.

  • Of these, 3.4% died during the follow up period.
  • The annual risk of death was about 0.8%, about four fold higher than in children without epilepsy.
  • In this group, the most common associated condition with death was intellectual disability/cerebral palsy and cardiovascular abnormalities, though seizure-related deaths (e.g., status epilepticus) and accidents were also common (8.3 and 11%, respectively).
  • The authors found no difference in sex, race/ethnicity or location of residence between living and deceased children with epilepsy.
  • Interestingly, the children with epilepsy who died were less likely to be uninsured and more likely to have Medicare. This suggests that many of the deceased children had difficult to treat epilepsy and significant disability and, at least in children, access to care is not a significant contributor to epilepsy mortality.

When is it SUDEP?

What is difficult to discern in this and other studies that use large administrative data sets, such as information from death certificates and vital statistics, is the contribution of sudden unexpected death in epilepsy (SUDEP) to this excess mortality. SUDEP, unlike other causes of death, such as accidents or suicide, does not have a unique diagnostic code. Therefore, one cannot determine if a person died from SUDEP without looking at the death certificate or, in many cases, reading the autopsy report. This is impractical for large-scale epidemiological projects such as this one.

The adoption of an administrative code for SUDEP in the future may improve surveillance studies and allow rapid assessment of public health measures on specific forms of epilepsy-related mortality.

Authored by: Daniel Friedman MD | SUDEP Editor on 2/2015

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