title: Quality of life in children with epilepsy: How does it compare with the quality of life in typical children and children with cerebral palsy?
abstract: Our objective was to compare the quality of life (QoL) of children with epilepsy to that of typical children and children with cerebral palsy (CP). We measured self- and proxy-reported QoL of children with epilepsy and contrasted that with data for typical children (European KIDSCREEN project) and children with CP (SPARCLE study). Children ages 8-12 years with epilepsy were recruited from six Canadian sites. Same-aged children with CP and children in the general population aged 8-11 years came from several European countries. All participants completed the KIDSCREEN-52 questionnaire. Our results showed no clinically important differences (>0.5 SD) between self-reported QoL in 345 children with epilepsy compared with 489 children with CP or 5950 children in the general population. However, parents reported clinically important differences between the epilepsy and the other groups in five KIDSCREEN-52 domains. Compared with the CP group, parents of children with epilepsy reported better QoL in physical well-being (Cohen d=0.81), social support (d=0.80), and autonomy (d=0.72). Parents reported poorer QoL in the domains of mood and emotions compared with both contrast groups (d=-0.72 and d=-0.53), and in the domain of bullying compared with the CP group (d=-0.51). Families should find comfort in the results, which indicate that children with epilepsy do not perceive any important differences in QoL compared with their typical peers. The comparisons of parental reports detect their group-specific observations and worries that need to be addressed by the health-care providers and may require specifically designed assessment batteries followed by appropriate interventions.
authors.affiliation: Mercer University College of Pharmacy and Health Sciences, Mercer University, Atlanta, GA, USA.
authors.forename: Meron
authors.initials: M
authors.lastname: Mezgebe
authors.affiliation: Michael G. DeGroote School of Medicine, McMaster University, Hamilton, ON, Canada.
authors.forename: Gileh-Gol
authors.initials: GG
authors.lastname: Akhtar-Danesh
authors.affiliation: Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada.
authors.forename: David L
authors.initials: DL
authors.lastname: Streiner
authors.affiliation: Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
authors.forename: Nora
authors.initials: N
authors.lastname: Fayed
authors.affiliation: Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
authors.forename: Peter L
authors.initials: PL
authors.lastname: Rosenbaum
authors.affiliation: Department of Pediatrics, McMaster University, Hamilton, ON, Canada. Electronic address: roneng@mcmaster.ca.
authors.forename: Gabriel M
authors.initials: GM
authors.lastname: Ronen
mesh_terms: D000339:Affect; D058445:Bullying; D002170:Canada; D002547:Cerebral Palsy / Q000523:psychology*; D002648:Child; D004644:Emotions; D004827:Epilepsy / Q000523:psychology*; D005060:Europe; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D010290:Parents; D026684:Personal Autonomy; D011788:Quality of Life; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Bullying; Child self-report; KIDSCREEN; Mental health; Patient-reported outcomes (PRO); Proxy report