Differences in child versus parent reports of the child's health-related quality of life in children with epilepsy and healthy siblings.

OBJECTIVES: Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls. METHODS: HRQOL was assessed 8 to 9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87), and parent (CHQ-PF50) versions. RESULTS: There were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores (P≤0.05). Parent-child agreement was low for cases and controls (kappa 0.27-0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5-year remission status and current antiepileptic drug use, but the case's self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL. CONCLUSION: Children with epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.

Racial differences in patient expectations prior to resective epilepsy surgery.

We assessed the nature and frequency of preoperative expectations among patients with refractory epilepsy who were enrolled in a seven-center observational study of epilepsy surgery outcomes. At enrollment, patients responded to open-ended questions about expectations for surgical outcome. With the use of an iterative cutting-and-sorting technique, expectation themes were identified and rank-ordered. Associations of expectations with race/ethnicity were evaluated. Among 391 respondents, the two most frequently endorsed expectations (any rank order) were driving (62%) and job/school (43%). When only the most important (first-ranked) expectation was analyzed, driving (53%) and cognition (17%) were most frequently offered. Nonwhites endorsed job/school and cognition more frequently and driving less frequently than whites (all P0.05), whether expectations of any order or only first-ranked expectations were included. Elucidating the reason for these differences can aid in the clinical decision-making process for resective surgery and potentially address disparities in its utilization.