Abstracts

Rationale: Children with epilepsy (CWE) have a high burden of psychiatric comorbidity and experience poor long-term psychosocial outcomes. We compared associations of epilepsy severity and chronic comorbidities with child-report and with parent-proxy reports of health-related quality of life (HRQOL) in CWE to determine: 1) if epilepsy severity and chronic comorbidities are differentially associated with HRQOL in CWE, and 2) if parents and children report these associations differently. Methods: In a prospective, community-based study of newly diagnosed childhood epilepsy, HRQOL of 278 CWE was assessed 8-9 years after diagnosis, using the Child Health Questionnaire (CHQ), a generic HRQOL measure with both child self-report (11 scales) and parent-proxy versions (12 scales). We compared mean child-reported (CR)-HRQOL scores for children with more versus less severe epilepsy, in addition to HRQOL scores of children with and without a chronic comorbidity, using t-tests. More severe epilepsy was characterized several ways: (a) not seizure-free for 5 years, (b) on anti-epileptic drugs (AEDs), (c) complicated (remote symptomatic epilepsy or epileptic encephalopathy), or (d) pharmacoresistant. Chronic comorbidities included (a) neurodevelopmental spectrum disorders (NDS), (b) psychiatric disorders, (c) migraine and (d) chronic medical conditions. We conducted similar comparisons in the parent-proxy reports of the child s HRQOL (PR-HRQOL). Multivariate linear regression was used to assess unique predictors of HRQOL. Results: Mean age of epilepsy onset was 4.4 (SD=2.6) years; 47% were female. Mean child age at follow-up was 13.0 (SD=2.6) years; 64% were 5-years seizure-free, 31% were on AEDs, 19% had complicated epilepsy, 12% were pharmacoresistant, 39% had a NDS, 25% had a psychiatric disorder, 15% had migraine, and 24% had a chronic medical condition. Epilepsy severity and having a chronic medical condition were generally not associated with CR-HRQOL, but having a psychiatric disorder, NDS, or migraine was. For example, CR-HRQOL for non-seizure free CWE was significantly worse compared to children who were seizure-free on only 1 scale (p?0.04) while CR-HRQOL for those children with a psychiatric disorder was significantly worse compared to those without a psychiatric disorder on 10 scales (p?0.03). In contrast, both epilepsy severity and all types of comorbidity were associated with PR-HRQOL. In multivariate analyses, having a psychiatric disorder was the most frequent and nearly exclusive predictor of CR-HRQOL (8 scales; p?0.02), whereas both NDS and psychiatric disorder were broadly and uniquely associated with PR-HRQOL across multiple scales. Conclusions: Chronic comorbidities, particularly psychiatric disorders, are more strongly associated with HRQOL in CWE than is epilepsy severity. Even as epilepsy remits, such comorbidities may have a greater impact on HRQOL than epilepsy alone, thereby raising concerns about potential unmet mental health needs of young people with childhood onset epilepsy as they transition to an adult care setting. Funding: NINDS R37-NS31146; Robert Wood Johnson Foundation (59982).