OBJECTIVES: The differences between child self-reports and parent proxy reports of
quality of life in a large population of children with cerebral palsy were studied.
We examined whether child characteristics, severity of impairment, socioeconomic
factors, and parental stress were associated with parent proxy reports being
respectively higher or lower than child self-reports of quality of life.
METHODS. This study was conducted in 2004–2005 and assessed child quality of life
(using the Kidscreen questionnaire, 10 domains, each scored 0–100) through
self-reports and parent proxy reports of 500 children aged 8 to 12 years who had
cerebral palsy and were living in 7 countries in Europe.
RESULTS: The mean child-reported scores of quality of life were significantly higher
than the parent proxy reports in 8 domains, significantly lower for the finances
domain, and similar for the emotions domain. The average frequency of disagreement
(child-parent difference greater than half an SD of child scores) over all
domains was 64%, with parents rating their child’s quality of life lower than the
children themselves in 29% to 57% of child-parent pairs. We found that high
levels of stress in parenting negatively influenced parents’ perception of their
child’s quality of life, whereas the main factor explaining parents’ ratings of
children’s quality of life higher than the children themselves is self-reported severe
CONCLUSIONS: This study shows that the factors associated with disagreement are
different according to the direction of disagreement. In particular, parental wellbeing
and child pain should be taken into account in the interpretation of parent
proxy reports, especially when no child self-report of quality of life is available. In
the latter cases, it may be advisable to obtain additional proxy reports (from
caregivers, teachers, or clinicians) to obtain complementary information on the
child’s quality of life.
- Pediatrics, Perinatology, and Child Health