title: Health-related quality of life of Canadian children and youth prenatally exposed to alcohol.
abstract: BACKGROUND
  In Canada, the incidence of Fetal Alcohol Spectrum Disorder (FASD) has been estimated to be 1 in 100 live births. Caused by prenatal exposure to alcohol, FASD is the leading cause of neuro-developmental disabilities among Canadian children, and youth.
  
  
  OBJECTIVE
  To measure the health-related quality of life (HRQL) of Canadian children and youth diagnosed with FASD.
  
  
  METHODS
  A prospective cross-sectional study design was used. One-hundred and twenty-six (126) children and youth diagnosed with FASD, aged 8 to 21 years, living in urban and rural communities throughout Canada participated in the study. Participants completed the Health Utilities Index Mark 3 (HUI3). HUI3 measures eight health attributes: vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain. Utilities were used to measure a single cardinal value between 0 and 1.0 (0 = all-worst health state; 1 = perfect health) to reflect the global HRQL for that child. Mean HRQL scores and range of scores of children and youth with FASD were calculated. A one-sample t-test was used to compare mean HRQL scores of children and youth with FASD to those from the Canadian population.
  
  
  RESULTS
  Mean HRQL score of children and youth with FASD was 0.47 (95% CI: 0.42 to 0.52) as compared to a mean score of 0.93 (95% CI: 0.92 to 0.94) in those from the general Canadian population (p < 0.001). Children demonstrated moderate to severe dysfunction on the single-attributes of cognition and emotion.
  
  
  CONCLUSIONS
  Children and youth with FASD have significantly lower HRQL than children and youth from the general Canadian population. This finding has significant implications for practice, policy development, and research.
authors.affiliation: Department of Paediatrics, St, Michael's Hospital, Toronto, Canada. stadeb@smh.toronto.on.ca
authors.forename: Brenda C
authors.initials: BC
authors.lastname: Stade
authors.forename: Bonnie
authors.initials: B
authors.lastname: Stevens
authors.forename: Wendy J
authors.initials: WJ
authors.lastname: Ungar
authors.forename: Joseph
authors.initials: J
authors.lastname: Beyene
authors.forename: Gideon
authors.initials: G
authors.lastname: Koren
mesh_terms: D000293:Adolescent; D000328:Adult; D001007:Anxiety / Q000209:etiology; D002170:Canada; D002648:Child; D002653:Child Behavior Disorders / Q000209:etiology* / Q000503:physiopathology; D016001:Confidence Intervals; D003863:Depression / Q000209:etiology; D002658:Developmental Disabilities / Q000209:etiology* / Q000503:physiopathology; D005260:Female; D063647:Fetal Alcohol Spectrum Disorders / Q000503:physiopathology* / Q000523:psychology*; D006801:Humans; D008297:Male; D010465:Perception; D011247:Pregnancy; D011788:Quality of Life; D012423:Rural Health; D012657:Self-Help Groups; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D014504:Urban Health