Doctor of Philosophy
Epidemiology and Biostatistics
Speechley, Kathy N
The long-term prognosis of pediatric epilepsy is favorable with respect to seizures, whereby 66% to 80% of children attain seizure control. However, psychiatric and psychosocial problems among children with epilepsy (CWE) and their parents are common, and little is known about their long-term outcomes. The objectives of this dissertation were to: 1) validate a parent-reported measure of young adult’s health-related quality of life (HRQOL), to allow for a consistent informant to report on CWE’s HRQOL from childhood into young adulthood; 2) delineate the long-term course of CWE’s HRQOL and identify the clinical, parent, and family characteristics associated with the trajectory of HRQOL; 3) evaluate the long-term HRQOL of mothers of CWE and identify the factors associated with long-term HRQOL; and 4) delineate the long-term course of depressive symptoms for mothers of CWE and identify factors associated with the trajectory of depressive symptoms.
Data came from the Heath-related Quality of Life in Children with Epilepsy Study (HERQULES), a Canada-wide prospective cohort study of 373 children, aged 4 – 12 years, with newly diagnosed epilepsy. Parents completed questionnaires at the time of epilepsy diagnosis, and 0.5, 1, 2, 8, and 10 years later. CWE’s and their mothers’ HRQOL were measured using the Quality of Life in Childhood Epilepsy Questionnaire, and the Short Form Health Survey, respectively. Mothers’ depressive symptoms were measured using the Center for Epidemiological Studies Depression Scale. Latent class growth models were used to evaluate the trajectory of CWE’s HRQOL and their mothers’ depressive symptoms over the long-term.
We found that changes in CWE’s HRQOL observed within the first two years after diagnosis of epilepsy remained stable over the long-term, and that mothers’ depressive symptoms largely remained stable over the entire follow-up period . The long-term trajectory of CWE’s HRQOL and mothers’ depressive symptoms were associated with the severity of epilepsy, neuropsychological comorbidities and family functioning at the time of epilepsy diagnosis. These results are important in identifying long-term outcomes and showing that targeting the family environment early on may lead to optimal HRQOL and mental health for children with epilepsy and their parents.
Summary for Lay Audience
Epilepsy is a condition of the brain characterized by repeated seizures. In the long-term, most children with epilepsy attain seizure control. However, there is increasing evidence about the impact of epilepsy beyond seizures, finding that children and their parents commonly have mental health problems (such as depression) and poor quality of life. Little is known about the long-term outcome of quality of life and mental health for children with epilepsy and their parents. The primary objective of this dissertation was to describe the course of quality of life and depression over the long-term for children with epilepsy and their mothers, respectively. A secondary objective was to identify the characteristics of epilepsy, children, parents, and the family that are associated with the patterns of quality of life and depression observed over time.
Neurologists practising across Canada identified children, aged 4 – 12 years, with newly diagnosed epilepsy. A total of 373 families participated by completing questionnaires at the time of epilepsy diagnosis and 0.5, 1, 2, 8, and 10 years later. At each time parents completed questionnaires reporting on their children’s quality of life and their own depressive symptoms.
We found that children’s quality of life changed most during the first two years after their epilepsy diagnosis, and remained stable thereafter over the long-term. One-third of children had a relatively poor quality of life at the time of epilepsy diagnosis and throughout the 10-year follow-up. We also found that mothers’ depressive symptoms remained stable over the long-term for most mothers, with 20% reporting high scores for depression symptoms throughout the 10-year follow-up. The patterns for children’s quality of life and mothers’ depressive symptoms over time were poorer among those with a more severe epilepsy, with cognitive/behavioral problems, and poorer family environment at the time of epilepsy diagnosis. These results are important in understanding long-term outcomes and showing that targeting the family environment early on may lead to improvements in quality of life and mental health for children with epilepsy and their parents.
Puka, Klajdi, "Childhood-onset epilepsy and long-term child and maternal well-being" (2021). Electronic Thesis and Dissertation Repository. 7738.
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