Abstracts

Rationale: Previous research suggests that, on average, the health-related quality of life (HRQL) of children with epilepsy improves during the first 24 months after diagnosis. However, less is known about subgroups of children who may experience less favourable outcomes over time. The objectives of the current study were to: 1) document trajectories of HRQL and 2) identify predictors of trajectory group in children with new-onset epilepsy. 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, HRQL), 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 Quality of Life in Childhood Epilepsy (QOLCE). Trajectories of HRQL were investigated using latent class trajectory modeling. Multinomial logistic regression using backward selection was used to identify child, parent, and family predictors of HRQL trajectories. Results: A total of 374 families responded at baseline and 283 completed the study. Five HRQL trajectories were observed: low increasing (4%), moderate decreasing (12%), moderate increasing (22%), high increasing (32%), and high stable (30%). Using the high stable group as the reference, children in the low increasing group were prescribed more AEDs (OR=2.7), had more behavior (OR=18.7) and cognitive problems (OR=5.7), parents with elevated depressive symptoms (1.1), and families with worse functioning (OR=0.8) and more demands (OR=1.1). Children in the moderate decreasing group were also prescribed more AEDs (OR=2.2), had more cognitive problems (OR=10.2), and families with worse functioning (OR=0.8) and more demands (OR=1.1). Children in the moderate increasing group had more behavior (OR=5.6) and cognitive problems (OR=3.3), parents with elevated depressive symptoms (OR=1.1), and families with worse functioning (OR=0.9) and more demands (OR=1.1). Finally, children in the high increasing group had parents with elevated depressive symptoms (OR=1.1). Conclusions: While the HRQL of children with new-onset epilepsy generally improves during the first 24 months after diagnosis, results suggested that children are not homogenous, but consist of groups with different trajectories and predictors of HRQL. Importantly, 10% of children experienced clinically important declines in HRQL. Problems associated with child behavior and cognition were the strongest predictors identified. Given that several risk factors are modifiable, it is important to examine these as potential targets to improve HRQL of children with new-onset epilepsy. Health care professionals should consider routinely assessing HRQL during clinic visits for pediatric epilepsy.