The Health‐Related Quality of Life of Children with Refractory Epilepsy: A Comparison of Those With and Without Intellectual Disability

Abstract

Summary:Purpose: To determine whether refractory epilepsy affects the health-related quality of life (HRQOL) of children with or without intellectual disability (ID), and if the presence of ID independently compromises HRQOL in children with refractory epilepsy.Methods: Subjects were parents of children with refractory epilepsy, whose syndrome had been defined using ILAE (International League Against Epilepsy) criteria and video-EEG monitoring. Children had the presence or absence of ID determined by formal neuropsychological or educational assessment. The relative effect of epilepsy on the two intellectual ability groups was determined using relevant clinical variables. Parents completed a valid epilepsy-specific HRQOL questionnaire for children, the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE), and, depending on intellectual ability level, the Child Behaviour Checklist or Developmental Behaviour Checklist.Results: Both intellectually normal children with epilepsy and children with epilepsy and ID were more likely to have psychosocial problems compared with their respective intellectual ability reference populations. The results also revealed that children with ID had reduced HRQOL compared with intellectually normal children; a result independent of epilepsy. Analysis of the relationship between epilepsy variables and HRQOL revealed that the QOLCE was the most sensitive in detecting variation in age at onset, seizure frequency, and medications taken. Conclusions:The HRQOL of children with refractory epilepsy is greatly affected, regardless of intellectual ability level. The presence of ID in children with epilepsy independently depresses HRQOL outcomes. Compared with two generic HRQOL measures, the QOLCE was the most sensitive measure to variation in epilepsy variables.

Psychosocial problems and seizure-related factors in children with epilepsy

“…Similar results were reported in CBCL studies by Hoare and Kerley (1991), whereas Sabaz et al (2001) found no significant relationship between CBCL problem scales and age at epilepsy onset.…”

“…This unexpected observation was in contrast to the significant relationship between behavioural problems and high seizure frequency reported in hospital-based studies (Hermann et al 1989. However, in children with refractory epilepsies, Sabaz et al (2001) found a tendency to more psychosocial problems in those with 1-10 seizures per 4 weeks than in those with higher seizure frequency and those who were seizure-free. Differences in findings between studies could be caused by variations in methods used.…”

Behavior and mental health problems in children with epilepsy and low IQ

“…Total Behavior, Internalizing and Externalizing Problems-The finding that children in the Low IQ group displayed the most behavior problems is consistent with past research showing that people with epilepsy and low IQ have relatively high rates of problems with behavior and mental health (Hoare 1993, Deb 1997, Espie et al 1999, Sabaz et al 2001. The children displayed more Internalizing Problems (anxiety/depression, withdrawal, and somatic complaints) than Externalizing Problems (delinquency and aggression).…”

Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort survey

“…This observation also supports evidence that seizure burden is a large determinant of QoL for people with epilepsy. 28,29 This study has some methodological limitations. Most participants (84%) reported belonging to a patient advocacy group, whose members possibly represent more engaged caregivers, more informed and with access to expert care.…”