Epilepsy is a common childhood neurologic disorder, affecting 0.5 to1% of children. Increased mortality occurs due to progression of underlying disease, seizure-related accidents, suicide, status epilepticus, aspiration during seizures, and sudden unexplained death in epilepsy (SUDEP). Previous studies show mortality rates of 2.7 to 6.9 per 1000 person-years (Berg et al., 2004, Sillanpaa & Shinnar, 2010). Potential risk factors include poor seizure control, intractable epilepsy, status epilepticus, tonic-clonic seizures, mental retardation, and remote symptomatic cause of epilepsy (Berg et al., 2004, Sillanpaa & Shinnar, 2010, Walczak et al., 2001). Few population-based studies of mortality and SUDEP in childhood-onset epilepsy have been published. The purpose of this study is to report mortality and SUDEP from a 30 year population-based cohort of children with epilepsy.
The Medical Diagnostic Index of the Rochester Epidemiology Project was searched for all codes related to seizure and convulsion in children living in Olmsted County, Minnesota and of ages birth through 17 years from 1980 through 2009. The medical records of these children were reviewed to identify all those with new-onset epilepsy, and to abstract other baseline and follow-up information. Potential risk factors including seizure type, epilepsy syndrome, history of status epilepticus, the presence and severity of neurologic impairment, and epilepsy outcome was reviewed. Epilepsy outcome was characterized by seizure frequency, number of anti-seizure medications (AEDs) used, and number of AEDs failed due to lack of efficacy, and epilepsy intractability at 1, 2, 3, 5, 10, 15, and 20 years after epilepsy onset. We followed all children through their most recent visit to determine vital status, cause of death, and whether autopsy was performed.
From 1980 to 2009, there were 467 children age birth through 17 years diagnosed with epilepsy while residents of Olmsted County, MN and had follow-up beyond the time of epilepsy diagnosis. Children were followed for a median of 7.87 years after the time of diagnosis (range 0.04–29.49 years) for a total of 4558.5 person-years. Sixteen (3.4%) of the children died, or 3.51 deaths per 1000 person-years. Two deaths were epilepsy-related (12.5%) for a rate of 0.44 per 1000 person years. One of these children died of probable SUDEP and one died of aspiration during a seizure. The remaining 14 deaths (87.5%) were due to other complications of underlying disease. Several risk factors for mortality were found, including abnormal cognition, abnormal neurologic exam, structural/metabolic etiology for epilepsy, and poorly controlled epilepsy.