title: The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability.
abstract: OBJECTIVE
  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.
authors.affiliation: School of Paediatrics, University of New South Wales, Sydney, Australia.
authors.forename: M
authors.initials: M
authors.lastname: Sabaz
authors.forename: D R
authors.initials: DR
authors.lastname: Cairns
authors.forename: J A
authors.initials: JA
authors.lastname: Lawson
authors.forename: A F
authors.initials: AF
authors.lastname: Bleasel
authors.forename: A M
authors.initials: AM
authors.lastname: Bye
mesh_terms: D000293:Adolescent; D017668:Age of Onset; D002648:Child; D002653:Child Behavior Disorders / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology; D002675:Child, Preschool; D015897:Comorbidity; D004827:Epilepsy / Q000175:diagnosis* / Q000453:epidemiology / Q000523:psychology; D005260:Female; D006304:Health Status; D006801:Humans; D008607:Intellectual Disability / Q000175:diagnosis* / Q000453:epidemiology / Q000523:psychology; D007361:Intelligence Tests / Q000706:statistics & numerical data; D008297:Male; D009483:Neuropsychological Tests / Q000706:statistics & numerical data; D010290:Parents / Q000523:psychology; D010555:Personality Inventory / Q000706:statistics & numerical data; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D012680:Sensitivity and Specificity; D011795:Surveys and Questionnaires