Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study.
BACKGROUND
Little is known about the quality of life (QoL) of disabled children. We describe self-reported QoL of children with cerebral palsy, factors that influence it, and how it compares with QoL of the general population.


METHODS
1174 children aged 8-12 years were randomly selected from eight population-based registers of children with cerebral palsy in six European countries and 743 (63%) agreed to participate; one further region recruited 75 children from multiple sources. Researchers visited these 818 children. 318 (39%) with severe intellectual impairment could not self-report; 500 (61%) reported their QoL using KIDSCREEN, an instrument with scores in ten domains, each with SD=10. Multivariable regression was used to relate QoL to impairments, pain, and sociodemographic characteristics. Comparisons were made with QoL data from the general population.


RESULTS
Impairments were not significantly associated with six KIDSCREEN domains. Comparison of least and most able groups showed that severely limited self-mobility was significantly associated with reduced mean score for physical wellbeing (7.6, 95% CI 2.7-12.4); intellectual impairment with reduced mean for moods and emotions (3.7, 1.5-5.9) and autonomy (3.3, 0.9-5.7); and speech difficulties with reduced mean for relationships with parents (4.5, 1.9-7.1). Pain was common and associated with lower QoL on all domains. Impairments and pain explained up to 3% and 7%, respectively, of variation in QoL. Children with cerebral palsy had similar QoL to children in the general population in all domains except schooling, in which evidence was equivocal, and physical wellbeing, in which comparison was not possible.


CONCLUSIONS
Parents can be reassured that most children aged 8-12 years with cerebral palsy will have similar QoL to other children. This finding should guide social and educational policy to ensure that disabled children participate fully in society. Because of its association with QoL, children's pain should be carefully assessed.
Dickinson
Heather O
HO
Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
Parkinson
Kathryn N
KN
School of Clinical Medical Sciences, Newcastle University, Newcastle upon Tyne, UK.
Ravens-Sieberer
Ulrike
U
Forschungsgruppe Psychosoziale Gesundheit, Robert Koch Institut, Berlin, Germany.
Schirripa
Giorgio
G
Azienda Sanitaria Locale Viterbo, Viale Trento, Viterbo, Italy.
Thyen
Ute
U
Klinik für Kinder- und Jugendmedizin, Universitätsklinikum Schleswig-Holstein, Lübeck, Germany.
Arnaud
Catherine
C
Institut National de la Santé et de la Recherche Médicale, Université Paul Sabatier, Faculté de Médecine, Toulouse, France.
Beckung
Eva
E
Göteborg University, The Queen Silvia Children's Hospital, Göteborg, Sweden.
Fauconnier
Jérôme
J
Université Joseph Fournier, SIIM-Pole Exploitation, Grenoble, France.
McManus
Vicki
V
Enable Ireland, Lavanagh Centre, Ballintemple, Cork, Ireland.
Michelsen
Susan I
SI
National Institute of Public Health, Copenhagen, Denmark.
Parkes
Jackie
J
School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
Colver
Allan F
AF
Sir James Spence Institute, Newcastle University, Royal Victoria Infirmary, Newcastle upon Tyne, UK. Electronic address: allan.colver@ncl.ac.uk.
D002547:Cerebral Palsy / Q000145:classification / Q000523:psychology*; D002648:Child; D003430:Cross-Sectional Studies; D005060:Europe; D005260:Female; D006801:Humans; D008297:Male; D010146:Pain / Q000145:classification; D011788:Quality of Life; D012720:Severity of Illness Index; D012923:Social Class; D012944:Social Support; D011795:Surveys and Questionnaires