title: Quality of life in children with new-onset epilepsy: a 2-year prospective cohort study.
abstract: OBJECTIVE
  To assess health-related quality of life (HRQL) over 2 years in children 4-12 years old with new-onset epilepsy and risk factors.
  
  
  METHODS
  Data are from a multicenter prospective cohort study, the Health-Related Quality of Life Study in Children with Epilepsy Study (HERQULES). Parents reported on children's HRQL and family factors and neurologists on clinical characteristics 4 times. Mean subscale and summary scores were computed for HRQL. Individual growth curve models identified trajectories of change in HRQL scores. Multiple regression identified baseline risk factors for HRQL 2 years later.
  
  
  RESULTS
  A total of 374 (82) questionnaires were returned postdiagnosis and 283 (62%) of eligible parents completed all 4. Growth rates for HRQL summary scores were most rapid during the first 6 months and then stabilized. About one-half experienced clinically meaningful improvements in HRQL, one-third maintained their same level, and one-fifth declined. Compared with the general population, at 2 years our sample scored significantly lower on one-third of CHQ subscales and the psychosocial summary. After controlling for baseline HRQL, cognitive problems, poor family functioning, and high family demands were risk factors for poor HRQL 2 years later.
  
  
  CONCLUSIONS
  On average, HRQL was relatively good but with highly variable individual trajectories. At least one-half did not experience clinically meaningful improvements or declined over 2 years. Cognitive problems were the strongest risk factor for compromised HRQL 2 years after diagnosis and may be largely responsible for declines in the HRQL of children newly diagnosed with epilepsy.
authors.affiliation: Department of Paediatrics, Western University, London, UK. kathy.speechley@lhsc.on.ca
authors.forename: Kathy N
authors.initials: KN
authors.lastname: Speechley
authors.forename: Mark A
authors.initials: MA
authors.lastname: Ferro
authors.forename: Carol S
authors.initials: CS
authors.lastname: Camfield
authors.forename: Wenyi
authors.initials: W
authors.lastname: Huang
authors.forename: Simon D
authors.initials: SD
authors.lastname: Levin
authors.forename: Mary Lou
authors.initials: ML
authors.lastname: Smith
authors.forename: Samuel
authors.initials: S
authors.lastname: Wiebe
authors.forename: Guangyong
authors.initials: G
authors.lastname: Zou
mesh_terms: D002648:Child; D002675:Child, Preschool; D004827:Epilepsy / Q000523:psychology*; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology*; D012307:Risk Factors; D011795:Surveys and Questionnaires