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.