Parent and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment

  • White-Koning M
  • Grandjean H
  • Colver A
 et al. 
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To examine parent-professional agreement in proxy-reports of child quality of life (QoL) and the factors associated with low child QoL in children with cerebral palsy (CP) and associated intellectual impairment. Professional (teacher, therapist, or residential carer) and parent reports of QoL for 204 children (127 males, 77 females, mean age 10 y 4 mo [SD 1y 6mo]; range 8-12 y) with CP and IQ0.5SD of scores) over all domains was 62%. High levels of stress in parenting negatively influenced parent reports of child QoL compared with professional reports, while child pain was associated with professionals rating lower than parents. Proxies do not always agree when reporting the QoL of children with severe disabilities. Parental well-being and child pain should be taken into account in the interpretation of QoL reports in such children.

Author-supplied keywords

  • *Parents
  • *Professional-Patient Relations
  • Adolescent
  • Cerebral Palsy/*epidemiology
  • Child
  • Female
  • Humans
  • Intellectual Disability/*epidemiology
  • Male
  • Observer Variation
  • Parenting
  • Quality of Life/*psychology
  • Questionnaires

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  • M White-Koning

  • H Grandjean

  • A Colver

  • C Arnaud

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