Comparative study of the health-related quality of life of children with epilepsy and their parents

Abstract

Purpose: We aimed to evaluate the health-related quality of life (HRQoL) of schoolchildren with epilepsy and its determinants and the HRQoL of their parents in comparison with those of healthy children and their parents.

Materials and methods: The study sample comprised 100 children with epilepsy (58 males), 8-16 years of age, diagnosed at least 6 months earlier. The children with epilepsy were divided into two subgroups: A, with well controlled idiopathic epilepsy, and B, with drug-resistant or symptomatic epilepsy and with concomitant neurodevelopmental problems. A control group consisted of 100 healthy age- and gender-matched children. One parent in each family completed two questionnaires standardized for use in Greece: KIDSCREEN-27 (version for parents) to assess the HRQoL of the children and SF-12 to assess the parental HRQoL. For each of the five dimensions of KIDSCREEN-27 and for the physical and mental component scales of the SF-12 tool, the standardized mean difference (SMD) was used for comparison between the various groups and subgroups. Linear regression analysis was used to explore the effect of specific illness-related factors on the five dimensions of KIDSCREEN-27 in the children with epilepsy.

Results: The parent-reported scores on KIDSCREEN-27 of the children with epilepsy were worse overall than those of healthy children, but the difference reached statistical significance only for the dimensions of "physical well-being" (p = 0.001) and "school environment" (p < 0.001). The differences were greater in adolescents (age group: 13.5-16years). The worst scores were recorded in subgroup B, the children with severe epilepsy, in the dimensions "physical well-being" (p < 0.001), "school environment" (p < 0.0001), and "peers and social support" (p = 0.044). The factors found to have a significant effect on all dimensions were mental retardation, physical disability, abnormal brain imaging findings, learning problems, and, to a lesser degree, administration of a large number of antiepileptic drugs and prolonged treatment. The parents of children with resistant epilepsy and accompanying neurodevelopmental problems scored significantly worse on the SF-12 mental health scale than those of healthy children (p < 0.001).

Conclusions: Epilepsy, particularly severe epilepsy with concomitant neurodevelopmental problems, adversely affects the HRQoL of both schoolchildren and their parents.

Keywords: Epilepsy; Health-related quality of life; KIDSCREEN-27; Quality of life; SF-12.