Epilepsy worry in adolescents and young adults with childhood-onset epilepsy ten years after diagnosis

This thesis explored the extent to which adolescents and young adults (AYAs) with childhood-onset epilepsy experience epilepsy worry 10 years after diagnosis and its association with AYAs’ clinical, demographic, and family characteristics. It also explored the extent to which epilepsy worry correlates with anxiety and depression. Data were derived from the Health-Related Quality of Life in Children with Epilepsy Study, a multicenter prospective cohort study that followed children with newly-diagnosed epilepsy for 10 years after diagnosis. At the 10-year follow-up, about 40% of 130 AYAs had experienced at least some epilepsy worry within the past four weeks. A binomial-gamma hurdle model found that 5-year seizure freedom status and current anti-epileptic drug treatment were associated with epilepsy worry. Epilepsy worry was weakly and moderately correlated with anxiety and depression, respectively. These findings highlight epilepsy worry as a potential distinct intervention target for improving the mental health of AYAs with childhood-onset epilepsy.