Abstracts

Rationale: Health-related quality of life is an important outcome in understanding the illness course and treatment effects in children with epilepsy. Few health-related quality of life instruments have undergone rigorous psychometric testing in paediatric epilepsy, however. In a large sample of children with new-onset epilepsy, the objectives of the current study were to: 1) model the factor structure of the Child Health Questionnaire using confirmatory factor analysis and 2) identify post-diagnosis predictors of health-related quality of life at 24 months. Methods: Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study (HERQULES), a prospective multisite study of children 4-12 years old with new-onset epilepsy followed for 24 months. Child (age, sex, family history, seizure type, epilepsy classification, duration, AEDs, severity, health-related quality of life), parent (age, marital status, education, employment, depressive symptoms), and family (functioning, resources, demands, income) factors were examined using parent and neurologist report at baseline (post-diagnosis), 6, 12, and 24 months. Health-related quality of life was measured using the Child Health Questionnaire (CHQ). Child, parent, and family predictors of health-related quality of life were investigated with multiple regression using a backward selection procedure. Results: A total of 374 families were included in the analysis. The original higher-order factor structure of the CHQ with physical (PHS, four factors) and psychosocial (PSS, six factors) summary scores was replicated and the confirmatory model had adequate fit: chi-square=1743.46 (df=768), CFI=0.945, TLI=0.941, RMSEA=0.058 (90% CI: 0.055, 0.062). Controlling for post-diagnosis PHS, factors predicting better 24-month PHS were: older age at seizure onset, fewer cognitive problems, parent with fewer depressive symptoms, and families with fewer demands (p<0.0001 for all). Controlling for post-diagnosis PSS, factors predicting better 24-month PSS were: older age at seizure onset, fewer behavior problems, and families with better functioning and fewer demands (p<0.0001 for all). Conclusions: This is the first study to confirm the factor structure of the CHQ, a commonly used generic measure of health-related quality of life in a sample of composed exclusively of children with epilepsy. Clinicians and researchers can be confident in using the CHQ to capture important domains of health-related quality of life paediatric epilepsy. From the predictive models, problems associated with child behavior and cognition were the strongest predictors identified. Given that several risk factors include modifiable parent and family characteristics, it is important to examine these more closely as potential targets for intervention to improve HRQL of children newly diagnosed with epilepsy. Health care professionals should continue to routinely assess health-related quality of life and consider adopting a family-centered care approach during clinic visits to optimize health outcomes.