Abstracts

Rationale: Little is known about what factors explain the variability in quality of life (QoL) among children and youth with epilepsy. We explored factors that children and parents draw on to evaluate the child’s QoL, hypothesizing that both biomedical and psychosocial factors are important determinants of QoL, and that children and parents weigh these factors differently when evaluating the child’s QoL. Methods: 131 CWE aged 8-15 years across North America and their parents completed a self- and proxy-reported validated QOl measure, and other epilepsy, co-morbidity, child and family scales. Analyses included simple and hierarchical regressions. We analyzed twice, 6-months apart, the variance in QoL explained by our predictor variables, which we clustered into 4 factor categories: (1) -seizure- or epilepsy-related; (2)-co-morbidity; and (3) child-specific and (4) family-specific psychosocial issues. Results: The analyses demonstrate that both biomedical and psychosocial variables influence the child’s HRQL from the child and parent’s perspective. The QoL subscales showed different constellation of variables between raters. Social support was the most significant and stable factor associated with self-reported QoL. The measured variables explained about 50% of the variance of the measured QoL for both the self- and parent-rated versions. Conclusions: This is the first study specifically designed to reveal different biomedical, psychosocial and personal variables that children and parents draw on to evaluate the child’s QoL. One should exercise caution interpreting these results. Only longitudinal studies lend themselves to establish temporal relationships, study the natural history of this population and identify variables that differentially predict self- and proxy report of the child’s QoL.