Social outcomes for adults with a history of childhood-onset epilepsy: A systematic review and meta-analysis

This review aimed to describe social outcomes in adulthood for people with a history of childhood-onset epilepsy and identify factors associated with these outcomes; focused on educational attainment, employment, income/financial status, independence/living arrangement, romantic relationships, parenthood, and friendships. A comprehensive search of MEDLINE, EMBASE, and PsycINFO was conducted, as well as forward and backward citation tracking. A total of 45 articles met inclusion criteria. Random effects meta-analyses were conducted, and subgroup analyses evaluated outcomes for people with epilepsy (PWE) with good prognosis (e.g., normal intelligence, ‘epilepsy-only’) and poor prognosis (e.g., intellectual disability, Dravet syndrome), and those who underwent epilepsy surgery in childhood. Among all PWE, 73% (95% confidence interval [CI]: 64–82%) completed secondary school education, 63% (95%CI: 56–70%) were employed; 74% (95%CI: 68–81%) did not receive governmental financial assistance; 32% (95%CI: 25–39%) were in romantic relationships; 34% (95%CI: 24–45%) lived independently; 21% (95%CI:12–33%) had children, and 79% (95%CI: 71–87%) had close friend(s). People with epilepsy often fared worse relative to healthy controls. Among PWE with a good prognosis, a comparable number of studies reported similar/better outcomes relative to controls as reported poorer outcomes. The most consistent predictor of poorer outcomes was the presence of cognitive problems; results of studies evaluating seizure control were equivocal. People with epilepsy with a good prognosis may show similar social outcomes as controls, though robust conclusions are difficult to make given the extant literature. Seizure control does not guarantee better outcomes. There is a need for more studies evaluating prognostic factors and studies with control groups to facilitate appropriate comparisons. •Described social outcomes of adults with childhood-onset epilepsy•Poorer outcomes were consistently associated with cognitive problems.•Seizure control did not guarantee better outcomes.•Found considerable heterogeneity in patient samples & operationalization of outcomes•The review identified gaps in knowledge that should be targets of future research.