Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Epidemiology and Biostatistics

Supervisor

Speechley, Kathy N.

Abstract

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.

Summary for Lay Audience

The unpredictable nature of seizures in epilepsy may provoke epilepsy worry—a state of worry specific to future seizures and their consequences that could influence the mental health of people with epilepsy. The aims of this thesis were to assess the extent to which adolescents and young adults (AYAs) experience epilepsy worry 10 years after their epilepsy diagnosis in childhood, and to identify possible risk factors for epilepsy worry. This thesis also assessed the extent to which AYAs’ epilepsy worry correlates with anxiety and depression. Data for this thesis 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. While the majority of the 130 AYAs studied were not experiencing epilepsy worry, which is consistent with the generally favourable long-term seizure outcome for childhood-onset epilepsy, about 40% of these AYAs had experienced at least some epilepsy worry within the past four weeks. AYAs who had not achieved seizure freedom and those who were currently taking anti-epileptic drugs have higher odds of experiencing any epilepsy worry, and AYAs who were currently taking anti-epileptic drugs were more likely to experience higher levels of epilepsy worry. Anxiety was found to be weakly correlated with epilepsy worry, while depression was moderately correlated with epilepsy worry. This means that epilepsy worry is related to anxiety and depression but is partially distinct. These findings suggest that epilepsy worry should be examined as its own aspect of mental health in people with epilepsy, both in research and in clinical practices. More research is needed to understand the relationship between anti-epileptic drugs and epilepsy worry. Healthcare professionals could consider screening AYAs in remission to identify those who still experience epilepsy worry and offer reassurance to reduce their worry.

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