title: Quality of life in childhood epilepsy: what is the level of agreement between youth and their parents?
abstract: Children and parents evaluate the child's quality of life (QOL) from their own perspectives; therefore, responses may differ, especially in abstract domains. We examined differences between self- and proxy-reported QOL of children with epilepsy. Children with active epilepsy (N=375) and their parents (N=378) separately completed the CHEQOL-25, a condition-specific QOL measure. The intraclass correlation coefficient was used to determine interrater agreement. Concordance on the Total CHEQOL-25 was 0.45 (P<0.01). Discrepancies were greatest for the subscales of Secrecy (0.24, P<0.01) and Present Concerns (0.32, P<0.01). School placement correlated with discrepancy in the Intrapersonal/Emotional subscale (r=0.19, P<0.05), and the child's age at testing correlated with discrepancy of the Total measure (r=0.15, P<0.01). This study demonstrates that parent perspectives alone are insufficient to measure their child's QOL. The CHEQOL-25 is a practical tool, with complementary parent and child versions, which can be used to determine health-related quality of life in children with epilepsy.
authors.affiliation: Department of Paediatrics, McMaster University, Hamilton, Ont, Canada. mohamad.mikati@duke.edu
authors.forename: L H
authors.initials: LH
authors.lastname: Verhey
authors.forename: D M
authors.initials: DM
authors.lastname: Kulik
authors.forename: G M
authors.initials: GM
authors.lastname: Ronen
authors.forename: P
authors.initials: P
authors.lastname: Rosenbaum
authors.forename: L
authors.initials: L
authors.lastname: Lach
authors.forename: D L
authors.initials: DL
authors.lastname: Streiner
mesh_terms: D000293:Adolescent; D002648:Child; D004827:Epilepsy / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011788:Quality of Life