The health-related quality of life of children with refractory epilepsy: Acomparison of those with and without intellectual disability

Purpose: To determine whether refractory epilepsy affects the health-relate d quality of life (HRQOL) of children with or without intellectual disabili ty (ID), and if the presence of ID independently compromises HRQOL in child ren 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 o f ID determined by formal neuropsychological or educational assessment. The relative effect of epilepsy on the two intellectual ability groups was det ermined using relevant clinical variables. Parents completed a valid epilep sy-specific HRQOL questionnaire for children, the Quality of Life in Childh ood 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 wit h epilepsy and ID were more likely to have psychosocial problems compared w ith their respective intellectual ability reference populations. The result s also revealed that children with ID had reduced HRQOL compared with intel lectually normal children: a result independent of epilepsy. Analysis of th e relationship between epilepsy variables and HRQOL revealed that the QOLCE was the most sensitive in detecting variation in age at onset, seizure fre quency, and medications taken. Conclusions: The HRQOL, of children with refractory epi lepsy is greatly af fected, regardless of intellectual ability level. The presence of ID in chi ldren with epilepsy independently depresses HRQOL outcomes. Compared with t wo generic HRQOL measures, the QOLCE was the most sensitive measure to vari ation in epilepsy variables.