title: Health-related quality of life and its relationship to neurological outcome in child survivors of stroke.
abstract: BACKGROUND
  Ischemic stroke during infancy and childhood has the potential to result in neurological impairments and affect a child's ability to function at home, school, and play. There are limited data on the effect of ischemic stroke on quality of life (QOL) of child survivors of ischemic stroke.
  
  
  OBJECTIVE
  To examine parent and child perspectives on QOL and examine factors that correlate with reduced QOL for child survivors of stroke.
  
  
  METHODS
  A prospective single-center cohort design was used. Participants included children 2-18 years of age surviving ischemic stroke. The Pediatric Quality of Life 4.0 Generic Inventory Scale (PedsQL) parent proxy-report (2-18 years of age) and child self-report (5-18 years of age) were completed by participants. Scores were compared with standardized normative data of healthy children and those with chronic medical conditions. Neurological deficits were measured with the Pediatric Stroke Outcome Measure, a standardized evaluation for children. The relationships between stroke type, neurological deficit, and health-related quality of life (HRQOL) were examined.
  
  
  RESULTS
  We assessed the QOL in 84 children with arterial ischemic stroke and 16 with cerebral sinovenous thrombosis at a mean age of 8.4 (4.12) years; 4.4 (2.93) years after their stroke. Results showed that both the parent-proxy and child self-report HRQOL scores were significantly reduced (P>.01) compared with normative data of healthy children. Of greatest concern for both parents and children was the effect of stroke on school, followed by its impact on emotional and social functions. In contrast to other studies, scores in physical domain were better than those in the psychosocial domain. Multivariate analysis showed that of neurological deficits after stroke was a significant predictor of poor HRQOL (P>.05). The children with poor neurological recovery had the lowest mean PedsQL scores and their QOL was significantly poorer compared with normative data of children with chronic health conditions (ie, diabetes, cancer).
  
  
  CONCLUSIONS
  The PedsQL appears to be a promising assessment tool of HRQOL for children following stroke. Both parent and child perspectives should be included because of the potential for there to be significant differences in perspectives. Although severity of neurological outcome is a significant predictor of reduced HRQOL, it accounted for a small proportion of variance in QOL scores. Further research is required to delineate other factors that are significant predictors of outcome.
authors.affiliation: Department of Occupational Therapy, University of Toronto, and Hospital for Sick Children, ON, Canada. s.friefeld@utoronto.ca
authors.forename: Sharon
authors.initials: S
authors.lastname: Friefeld
authors.forename: Ophelia
authors.initials: O
authors.lastname: Yeboah
authors.forename: Janalynn E
authors.initials: JE
authors.lastname: Jones
authors.forename: Gabrielle
authors.initials: G
authors.lastname: deVeber
mesh_terms: D000293:Adolescent; D001921:Brain / Q000503:physiopathology*; D002648:Child; D002675:Child, Preschool; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D011788:Quality of Life; D020521:Stroke / Q000401:mortality* / Q000503:physiopathology*; D015996:Survival Rate