Perceived impact of childhood-onset epilepsy on quality of life as an adult

Purpose: Childhood-onset epilepsy is a common disorder. The long-term impact of having childhood epilepsy on quality of life (QOL) as an adult, whether or not seizures are in remission, has not been systematically studied. Methods: A population-based cohort of 245 children younger than 16 years with active epilepsy between 1961 and 1964 residing in the catchment area of Turku University Hospital was followed up prospectively until 1997. Of the 99 surviving cases with uncomplicated epilepsy and 99 matched population controls, 91 subjects and controls completed questionnaires on QOL and psychosocial outcomes. Results: Of the 91 subjects, 61 (67%) were in remission off medication, 13 (14%) in remission on medications, and 17 (19%) were not in remission. Subjects on medication, whether in remission or not, had worse scores on both general measures of QOL and epilepsy-specific measures than did either controls or subjects in remission off medications. They also had significantly higher rates of unemployment (p < 0.001) and lower socioeconomic status. These differences could not be accounted for by differences in education or seizure frequency. Subjects in remission off medication had rates of employment and socioeconomic status similar to those of controls. All subjects, regardless of remission status, had lower rates of marriage and of having children than did controls (p < 0.001). Conclusions: Childhood-onset epilepsy has a persistent long-term adverse impact on health-related quality of life. The major impact is on those still on medications as adults, whether or not they are in remission. The impact on those in remission off medications is relatively modest.