Abstracts

Rationale: Understanding why some children experience compromised health-related quality of life (HRQL) over the course of epilepsy while others do not is essential to establishing appropriately timed and directed interventions to optimize HRQL. The Health-related Quality of Life in Childhood Epilepsy Study (HERQULES) was designed to: i) describe the course of HRQL during the first 2 years after diagnosis with epilepsy in children aged 4-12 years and ii) prospectively assess child and family determinants of HRQL, guided by a conceptual model of family adaptation. This presentation will describe the design and methodology of this national, prospective cohort study and provide some preliminary baseline results. Methods: Pediatric neurologists across Canada (n=52) initially approached parents of eligible children newly diagnosed with epilepsy and continue to provide clinical information at each data point. Parents of 446 children (97% of those eligible) agreed to participate by completing 4 mailed questionnaires: Time 1 (T1) shortly after child’s diagnosis, and 6 (T2), 12 (T3) and 24 months (T4) later to provide information regarding family socio-demographic characteristics, life stressors, family adaptation, parent’s mental health status and coping responses, parent’s perception of their child’s epilepsy care and the child’s HRQL. Study accrual is complete and 376 T1 questionnaires have been returned to date; follow-up is ongoing with 285 questionnaires returned for T2, 210 for T3 and 123 for T4. HRQL was assessed using the Quality of Life in Children with Epilepsy Questionnaire (QOLCE) and the Child Health Questionnaire (CHQ). Both assess several separate domains of HRQL with scores ranging from 0 (low functioning) to100 (high functioning). Results: Response rate for parents at T1 is 82%. The preliminary sample of 341 children aged 4-12 years (mean=7.3 years; SD=2.4) of which 53% are boys, is clinically diverse with 42% experiencing generalized and 58% partial seizures. Overall severity of epilepsy as rated by the neurologists ranges from not at all severe (20%) to very/quite/extremely severe (5%). QOLCE scores on its 16 subscales ranged from a mean of 45.95 (SD=9.63) for Energy/Fatigue to 80.37 (SD-24.49) for Social Integration. The mean CHQ summary scores were 48.26 (SD=11.16) for Physical Health and 44.62 (SD=10.79) for Psychosocial Health. Conclusions: HERQULES has successfully collected comprehensive data for a large, clinically diverse sample of children with newly diagnosed epilepsy. The study achieved a high initial response rate for both the pediatric neurologists and parents of eligible children from across Canada and is maintaining a high retention rate. The comprehensive information collected during the 2 years following onset of epilepsy on clinical, child and family characteristics will enable us to determine the relative importance of individual risk and protective factors and assess possible interactions among factors. (Funded by Canadian Institutes of Health Research Grant (MOP-117493) to Speechley et al.)