Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy.
OBJECTIVE
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 child pain.


CONCLUSIONS
This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental well-being 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.
White-Koning
Melanie
M
Institut National de la Santé et de la Recherche Médicale, U558, Faculté de Médecine, 37 Allées Jules Guesde, 31073 Toulouse Cedex, France. koning@cict.fr
Arnaud
Catherine
C
Dickinson
Heather O
HO
Thyen
Ute
U
Beckung
Eva
E
Fauconnier
Jerome
J
McManus
Vicki
V
Michelsen
Susan I
SI
Parkes
Jackie
J
Parkinson
Kathryn
K
Schirripa
Giorgio
G
Colver
Allan
A
D000293:Adolescent; D000367:Age Factors; D002547:Cerebral Palsy / Q000453:epidemiology / Q000523:psychology*; D002648:Child; D003147:Communication Disorders / Q000453:epidemiology; D005060:Europe / Q000453:epidemiology; D005260:Female; D006801:Humans; D007182:Income; D007360:Intelligence; D008297:Male; D015999:Multivariate Analysis; D010146:Pain / Q000453:epidemiology / Q000523:psychology; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D012928:Social Desirability; D012944:Social Support; D013315:Stress, Psychological / Q000453:epidemiology; D011795:Surveys and Questionnaires