Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Epidemiology and Biostatistics

Supervisor

Speechley, Kathy N.

Abstract

This study estimated the course of health-related quality of life (HRQL) over 8 years among children newly diagnosed with epilepsy. Levels of HRQL in children newly diagnosed with epilepsy were assessed over 8 years and compared to levels reported for peers in the general population. Data came from the Health-Related Quality of Life in Children with Epilepsy Study, a multi-center prospective study of children in Canada with epilepsy. Parents of children with epilepsy reported their children were comparable to (or better than) their counterparts in the general population on the majority of individual health concepts 8 years post diagnosis. On average, fewer family resources, the presence of parental depressive symptoms, and cognitive problems are significantly associated with worse HRQL over time. Future research should focus on interventions that target parental depressive symptoms and family resources to improve the HRQL of individuals with childhood-onset epilepsy.

Summary for Lay Audience

Children newly diagnosed with epilepsy have poorer well-being related to their overall health, also known as, health-related quality of life (HRQL), than their peers in the general population, but little is known about whether this remains the case in the long-term. Also, little is known about the factors associated with the course of HRQL for children with epilepsy in the long-term. The aim of this thesis was to evaluate the course of HRQL over the long-term in children who have been newly diagnosed with epilepsy. This thesis compared levels of HRQL in children eight years after a diagnosis of epilepsy to levels of HRQL in children in the general population. This thesis also identified factors that contribute to change in HRQL over time in children with epilepsy. Overall, parents of children with epilepsy reported their children’s HRQL 8 years after diagnosis was similar to the general population. However, some are experiencing worse or no change in HRQL. Additionally, family environment, and their children having cognitive problems were associated with HRQL over time. Taken together, over the long-term children with epilepsy are doing well, however, some are at risk for poor HRQL. The current results are important in recognizing what factors other than seizure experience are related to HRQL over time. Understanding that there is a potential need to identify those at risk for poor HRQL early after diagnosis may help parents and clinicians to make decisions regarding these children’s health care.

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