Childhood-onset epilepsy and long-term child and maternal well-being
Abstract
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.