Quality of life in childhood epilepsy: What is the level of agreement between youth and their parents?
Verhey, Leonard H. Kulik, D. M. Ronen, Gabriel M. Rosenbaum, Peter Lach, L. Streiner, David L.
Verhey, Leonard H.
Kulik, D. M.
Ronen, Gabriel M.
Rosenbaum, Peter
Lach, L.
Streiner, David L.
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.
Keywords
health-related quality of life, epilepsy, childhood, cheqol-25, child–parent agreement, discrepancy, intraclass correlation coefficient
Date
2009
Type
Journal article
Journal
Epilepsy & Behavior
Book
Volume
14
Issue
2
Page Range
407-410