Abstracts

Rationale: Health-related quality of life (HRQL) is an important outcome in understanding the course of illness and effects of treatment in children with epilepsy. Population studies of adults who had epilepsy and convulsive status epilepticus (CSE; convulsion lasting ≥30 minutes or recurrent convulsions occurring over a 30-minute period without recovery of consciousness between convulsions) in childhood showed no association with educational attainment, employment status, and income compared to those who did not have CSE. These studies shed light on the social functioning aspect of HRQL, but it is important to extend assessments to encompass the multidimensionality that is central to HRQL: disease state/physical symptoms, functional status, psychological functioning, and social functioning. The aim of this study was to examine the impact of CSE on trajectories of HRQL in the first 24 months following a diagnosis of epilepsy in children. Methods: Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study (HERQULES), a prospective multisite study of children aged 4-12 years newly diagnosed with epilepsy followed for 24 months. Child, parent, family, and clinical factors were examined at diagnosis and at 6, 12, and 24 months. Neurologists reported whether children had CSE. Parents reported on HRQL using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE). Multilevel, growth mixture modeling was used to examine the influence of CSE on trajectories of HRQL. Hierarchical regression was used to identify predictors of 24-month HRQL. Results: N=353 children were included in the analysis, of which 17 (4.8%) had CSE at diagnosis. Five additional children also experienced CSE but their first episode was reported after diagnosis and were excluded from the analysis. Children had a mean age of 7.5 (SD 2.3) years and 53% were male. Adjusting for child sex, age, epilepsy severity, seizure type, behavior and cognitive problems, AED use and side effects, and family factors (functioning, demands, parent depression), children with CSE differed significantly from those without CSE on QOLCE scores at each occasion (p<0.001). Trajectories diverged substantially at 12 months. The largest difference was observed at 24 months (Figure). Predictors of 24-month HRQL were: CSE, epilepsy severity, behavior and cognitive problems, parent depression and family functioning and demands (p<0.05). The model explained 47% of the variance in QOLCE scores. Conclusions: CSE has a significant detrimental impact on HRQL which is apparent at 24 months after epilepsy diagnosis in children. Important unanswered questions remain about the nature of the relationship between CSE and HRQL: Do the effects of CSE continue after 24 months post-epilepsy diagnosis and persist into adulthood? Do recurrent episodes of CSE have an additive effect that further reduces HRQL? Research that addresses these questions will be a valuable contribution to the understanding HRQL and improve the lives of children with epilepsy.