Long-Term Mortality in Childhood-Onset Epilepsy

Summary and Comment |
January 11, 2011

Long-Term Mortality in Childhood-Onset Epilepsy

  1. Robert C. Knowlton, MD, MSPH

Long-term follow-up of children with epilepsy reveals factors related to increased mortality.

  1. Robert C. Knowlton, MD, MSPH

The risk for death related to epilepsy remains unclear. Observational studies have suggested that patients with uncontrolled seizures have a higher mortality rate than patients with seizures controlled by medication or surgery, who have no apparent increase in mortality. To provide longer-term data, researchers conducted a large population-based cohort study of 245 patients with incident or prevalent epilepsy beginning in childhood who were tracked for a median of 40 years, allowing for assessment of mortality and associated risk factors. Epilepsy syndromes, seizure types, etiologies, and causes of death were well characterized. The rate of autopsy examination for cause of death was very high (70%).

Of the 60 deaths, 55% were epilepsy-related. Depending on classification, sudden unexplained death in epilepsy occurred in 18 to 23 patients (7%–9% of the entire cohort). Of the 60 deaths, 85% occurred in patients who were not seizure-free (defined as 5-year terminal remission). In a multivariate analysis, only absence of 5-year terminal remission was associated with increase risk for death.


This important update on a previously published study of this cohort (N Engl J Med 1998; 338:1715) reveals that epilepsy-related mortality is higher than originally estimated. Further, this report establishes that increased mortality is limited to patients who are not in terminal remission. Nonetheless, some patients were in remission at the time of sudden death. The findings raise the question of how aggressive epilepsy treatment should be. Clearly, the findings are relevant to risk-benefit assessments of epilepsy surgery for individual patients. For example, in a decision analysis of temporal lobe epilepsy surgery, the mortality risk without surgery was so high that surgery was strongly favored in all reasonable scenarios, even considering patients who did not become seizure-free after the surgery (JAMA 2008; 300:2497). Given the epilepsy-related mortality rates reported in the current study, even neocortical epilepsy resection (which may have lower long-term seizure-free outcomes than other epilepsy resections) is favored for some patients.


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