Epilepsy severity, parental knowledge, and health-related quality of life in children with epilepsy and their parents

Objectives Although the International League Against Epilepsy recognizes the psychological and social burden of epilepsy, it does not explicitly address health-related quality of life (HRQoL). Improving the HRQoL of children with epilepsy (CwE) and their families is an essential therapeutic goal. This study examined the clinical, sociodemographic, and psychosocial factors associated with the HRQoL of CwE and their parents, with particular focus on epilepsy severity, parental knowledge, and coping mechanisms. Methods This cross-sectional, descriptive, correlational study included 74 parents of CwE. Participants completed validated questionnaires assessing child and parental HRQoL, parental epilepsy-related knowledge, and coping strategies. Clinical data were extracted from electronic medical records. Epilepsy severity was evaluated using both the clinician-rated Global Assessment of Severity of Epilepsy (GASE) and a newly developed, data-driven severity score that does not require physician input. Pearson’s correlations and stepwise linear regression analyses were used to examine variables associated with child and parental HRQoL. Results Epilepsy severity, parental education, and parental social knowledge showed significant correlations with HRQoL in both children and parents. Regression analyses demonstrated that lower epilepsy severity, particularly as measured by the newly developed score, and regular school attendance were most strongly associated with higher HRQoL in children. Parental HRQoL was best explained by parental social knowledge, the child’s HRQoL, and the severity of the child’s epilepsy. These results highlight the interdependence of clinical and psychosocial factors influencing family well-being. Conclusions Epilepsy severity and parental social knowledge are key factors associated with the HRQoL of CwE and their parents. These findings underscore the importance of comprehensive, family-centered care that integrates clinical management with targeted parental education to improve HRQoL outcomes for families affected by childhood epilepsy.