Abstracts

Rationale: We previously reported on the course of health-related quality of life (HRQL) in children 4-12 years of age with new-onset epilepsy over the first two years and risk factors for compromised HRQL two years after diagnosis (Speechley et al. Epilepsia; 79:1548-1555). It is important to understand the natural course of HRQL and associated risk-factors beyond the first two years to offer families information about long-term prognosis and identify malleable early risk factors for longer-term HRQL as targets for interventions aimed at positively impacting trajectories of HRQL. Our objectives are to describe the course of HRQL to eight years post-diagnosis in the cohort we have followed since diagnosis and report on child and family risk factors at the time of diagnosis for long-term HRQL.Methods: Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study (HERQULES), a multi-center prospective cohort study of children 4-12 years old with new-onset epilepsy. Parents reported on children’s HRQL and family factors (family functioning, resources, demands, parents’ depressive symptoms), and neurologists reported on clinical characteristics (types of seizures and epilepsy syndromes, frequency of seizures, severity of epilepsy, cognitive and behavior problems, number of AEDs and side effects) at baseline, six months, one, two and eight years later. Children’s HRQL was measured using the Quality of Life in Childhood Epilepsy (QOLCE). Means were computed for the QOLCE summary scale and each sub-scale. Growth curve modelling was used to describe the trajectory of overall HRQL over the eight year period. A backwards, stepwise regression approach was used to identify baseline factors predicting compromised HRQL eight years post-diagnosis.Results: Parents of 373 (82%) children with epilepsy participated by completing questionnaires at baseline; 282 were retained at the two-year and 192 at the eight-year follow-ups. Average levels of HRQL eight years after diagnosis were similar to those recorded at the two-year follow-up [mean summary QOLCE score 76.1 (15.6)]. Baseline risk factors for poor HRQL eight years post-diagnosis were poor family resources (p=0.002), younger age at onset (p=0.004), cognitive problems (p=0.013), and more antiepileptic drugs prescribed (p=0.043) after controlling for baseline HRQL.Conclusions: On average, HRQL was good eight years post-diagnosis but with considerable variation across individuals. These results describe an extended average trajectory where HRQL was compromised at diagnosis, improved over first two years with the largest change in the first six months. The rate of change slowed with the average HRQL eight years post-diagnosis being similar to that of two years post-diagnosis. Cognitive problems are a key risk factor for subsequent HRQL, consistent with results from the two-year follow-up, along with number of antiepileptic drugs prescribed and family resources to adapt to stress. Source of Funding: Canadian Institutes of Health Research