Published online October 1, 2007
PEDIATRICS Vol. 120 No. 4 October 2007, pp. e804-e814 (doi:10.1542/peds.2006-3272)
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ARTICLE

Determinants of Child-Parent Agreement in Quality-of-Life Reports: A European Study of Children With Cerebral Palsy

Melanie White-Koning, PhDa,b, Catherine Arnaud, MDa,b,c, Heather O. Dickinson, PhDd, Ute Thyen, MDe, Eva Beckung, PhDf, Jerome Fauconnier, MDg, Vicki McManus, BAh, Susan I. Michelsen, PhDi, Jackie Parkes, PhDj, Kathryn Parkinson, PhDk, Giorgio Schirripa, MDl,{dagger} and Allan Colver, MDm

a Institut National de la Santé et de la Recherche Médicale, U558, Toulouse, France
b Université Toulouse III Paul Sabatier, Département d’Epidémiologie Economie de la santé et Santé publique, Toulouse, France
c Centre Hospitalier Universitaire de Toulouse, Service d'Epidémiologie, Toulouse, France
d Newcastle University, School of Population and Health Sciences, Newcastle-upon-Tyne, United Kingdom
e Universitatsklinikum Schleswig-Holstein, Klinik fur Kinder, Lubeck, Germany
f Göteborg University, Queen Silvia Children's Hospital, Göteborg, Sweden
g Université Joseph Fourier, Laboratoire Techniques de l’Ingénierie Médicale et de la Complexité, Grenoble, France
h Enable Ireland, Lavanagh Centre, Cork, Ireland
i National Institute of Public Health, Copenhagen, Denmark
j School of Nursing & Midwifery, Queen's University Belfast, Belfast, United Kingdom
k School of Clinical Medical Sciences
m Sir James Spence Institute, Newcastle University, Newcastle-upon-Tyne, United Kingdom
l Azienda Sanitaria Locale Viterbo, Viterbo, Italy

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 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.

Key Words: cerebral palsy • child • parents • proxy • quality of life

Abbreviations: CP—cerebral palsy • QoL—quality of life • SPARCLE—Study of Participation of Children With Cerebral Palsy Living in Europe

Accepted Feb 23, 2007.