How accurately do adults judge children with epilepsy? A multi-informant perspective on quality of life and child characteristics

PURPOSE: This study compared self-reported quality of life in children with epilepsy, using the Czech modified CHEQOL-25, with proxy ratings provided by parents/guardians and teachers. We further examined how these two groups evaluated the children's personal and behavioral characteristics. Finally, we compared parental and teacher judgments of the child's intelligence and popularity with objective indicators from standardized nonverbal intelligence testing and sociometric measures. METHODS: The study included CWE (n = 104), their parents/guardians (n = 104), their homeroom teachers (n = 104), and their classmates (n = 1829). Of the 104 child-parent/guardian-teacher triads, 99 provided fully completed items. RESULTS: Overall, parents'/guardians' ratings showed with intraclass correlation agreement (ICC) between 0.52 and 0.70 for different scales only moderate agreement with children's self-reported quality of life. In the case of teachers, the agreement was even significantly lower with ICC between -0.11 and 0.51. Both parents/guardians and teachers tended to overestimate the child's confidence in keeping up with peers, while underestimating the child's number of friends and the extent to which the child feels able to live a normal life despite epilepsy. Compared with teachers, parents/guardians rated children lower in behavioral regulation (orderliness, discipline, calmness) but higher in cognitive abilities (intelligence, curiosity, creativity) and social-emotional functioning (popularity, empathy, cheerfulness, competitiveness). When compared with objective measures, both groups showed a tendency to overestimate children's popularity (12% of parents/guardians and 6% of teachers) and especially their intelligence (35% and 16%, respectively). CONCLUSION: These findings-derived from one of the largest datasets of its kind-have important implications for family counselling, teacher training, and professional development.