Abstracts

Rationale: Health-related quality of life (HRQL) is a subjective phenomenon implying that its evaluation is ‘in the eye of the beholder’. Although inter-rater agreement is higher on ratings of observable function such as behaviour and participation, agreement on ratings of internal experiences are more likely to produce discordance. The same principle may be applied to HRQL, as parents place different values on certain factors that comprise HRQL than do their children. Taken together, child- and parent-reports provide a more complete evaluation of the effect of epilepsy and its treatment on the child. We hypothesized that the less visible and more abstract the domain of HRQL, the greater the discordance such between parent and child responses. Methods: Children and youth with epilepsy (CYWE) were recruited from tertiary epilepsy clinics across Canada who met the following criteria: 1) ages 8-17 years, 2) diagnosis of active epilepsy, with at least one seizure in the previous 24 months, and 3) the ability of the child or youth and their parent(s) to read and comprehend English at a Grade 3 level (IQ~70 or above). N=391 children and their parents separately completed a measure of HRQL (CHEQOL-25). Child and parent ratings were compared using the Intraclass Correlation Coefficient (ICC). Results: The following table shows CHEQOL-25 total scale and subscale results for N=391 CYWE and one of their parents (Table 1). Parents rated the total HRQL of the child lower than did the children themselves. Conclusions: Parents’ rating of their child’s HRQL was discrepant from the child self-report, especially on non-visible, abstract domains like ‘secrecy’ and ‘present worries.’ Parent report of the child’s HRQL is not an accurate proxy of the child’s perspective, as the weight they ascribe to factors comprising HRQL is different from that of their child’s. Both perspectives contribute to generating a description of the complexity of the role that epilepsy plays in the child’s HRQL.