What Happens to Children With Epilepsy When They Become Adults? Some Facts and Opinions

BACKGROUND: The adult outcome after childhood onset epilepsy is a complex subject because seizure types and severity are diverse, comorbidities are common, and additional factors influence social outcome. We review selected data about seizure remission or persistence and social outcome in adulthood. METHODS: Information came from published literature, especially population-based studies. RESULTS: In general, approximately 50-60% of children with epilepsy eventually have complete seizure remission (i.e., seizure free and off antiepileptic drug treatment): with longer follow-up, the remission rate improves. Predicting remission, persistent or intractable epilepsy is often inaccurate for an individual patient. A tiny proportion of children with epilepsy die as the result of seizures or sudden unexpected death in epilepsy patients; however, an otherwise normal child has the same risk of death as the reference population. When uncontrolled epilepsy persists into adulthood, the rate of sudden unexpected death in epilepsy patients possibly increases. Reports about social outcome in adulthood are increasing. For those with intellectual disability, a lifetime of dependency is to be expected. For those with normal intelligence, adult life is often unsatisfactory with high rates of incomplete education, unemployment, poverty, social isolation, inadvertent pregnancy, and psychiatric disorders. Seizure remission does not ensure good adult social outcome. CONCLUSIONS: Although seizure control in childhood is important, anticipating poor social outcome in adulthood may allow earlier interventions. A well-orchestrated transition from pediatric to adult health care may be beneficial for the 40-50% with persistent seizures and for the majority who are at risk for adult social difficulties.