Differences in Child versus Parent Reports of the Child's Health-Related Quality of Life in Children with Epilepsy and Healthy Siblings

Abstract

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 8–9 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. However, parent ratings were significantly better (higher HRQOL) for sibling controls compared to 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 anti-epileptic 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.

Correlates of health‐related quality of life in children with drug resistant epilepsy

“…A few studies have reported concordance between parent and child reports of child HRQL, 49,50 whereas others have documented discordance. [51][52][53] Furthermore, a recent study by Ferro (2014) identified informant as a moderator of associations between risk factors and child HRQL. 12 Correspondingly, to improve our understanding of robust risk factors of HRQL, future researchers should remain cognizant of the proxy problem and overcome its limitations through the implementation of multi-informant methodologic approaches.…”

Quality of life in children with new-onset epilepsy

“…In support of mothers as reporters, we previously reported encouraging results from this same sample that mothers' reports of children's HRQL were not affected by mothers' depressive symptoms. 33 Parent report has been found to be an adequate substitute for child report at the group level, as used here, 34 but a recent study of CWE 35 found that parents reported poorer HRQL than children themselves. Recognizing the importance of patient report, it is included in the subsequent follow-up of this cohort currently under way.…”

Children's perspective of quality of life in epilepsy

“…8 In addition, numerous reviews and studies report caregiverchild discrepancies in QOL scores. [9][10][11][12][13] Before asking which variables best explain or predict QOL, we need first to ask children.…”