Abstracts

Rationale: The primary goal of epilepsy treatment is to control seizures, but improving health-related quality of life (HRQL) for children with epilepsy and their families is a major component of optimal management. Most previous research is based on relatively small samples, often focusing on selected sub-groups such as adolescents or children with intractable/refractory epilepsy. Occasionally comparisons with other chronic conditions are documented and most studies are cross-sectional, thus providing only a one-time "snap-shot" of outcomes. Little information is available about HRQL at any point in the course of epilepsy in childhood using comprehensive, multidimensional assessment tools. Virtually no information is available on HRQL over time. Our objective is to describe the course of HRQL over the first 2 years post-diagnosis in children four to twelve years of age with new onset epilepsy. We hypothesized that HRQL would be lowest post-diagnosis and at its highest two years later. Methods: Data are from the Health-Related Quality of Life Study in Children with Epilepsy Study (HERQULES), a national prospective study of children newly diagnosed with epilepsy in Canada. HRQL was assessed using two validated parent-report measures: an epilepsy-specific measure, Quality of Life in Children with Epilepsy Questionnaire (QOLCE); and a generic measure, Child Health Questionnaire (CHQ) at 4 times: post-diagnosis, and 6, 12, and 24 months later. Linear mixed-models as implemented in SAS software version 9.1 were used to assess changes in mean levels of HRQL between assessments at post-diagnosis and two years later. Results: Among the 72 pediatric neurologists invited to participate, 53 identified 460 eligible families, 376 (82%) of whom participated. The overall QOLCE mean score as well as CHQ Physical and Psychosocial Summary mean scores were all lowest post-diagnosis (QOLCE Overall mean=68.6, SD=13.3; CHQ Physical mean=48.7, SD=10.8; CHQ Psychosocial mean=44.8, SD=10.8, respectively) and improved to the highest levels observed at the final assessment 24 months later (QOLCE overall mean=72.6, SD=13.3; CHQ Physical mean=51.5, SD=10.0; CHQ Psychosocial mean=48.1, SD=11.2). Linear mixed-effects models indicated that all three HRQL mean scores two years after diagnosis were significantly higher than those observed post-diagnosis (p<0.0001). Amount of change over 2 years for individual domains of HRQL was quite variable with several domains showing large improvement. Trajectories of changes in HRQL across all four times between post-diagnosis and two years will also be described. Conclusions: HRQL in children ages four to twelve with new-onset epilepsy is compromised initially post-diagnosis and improves significantly over the next two years to levels close to those reported for healthy children. An important next step is to identify patient, family and health care factors affecting these trajectories of HRQL during the first two years after diagnosis.