title: Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study.
abstract: 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.
authors.affiliation: Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Heather O
authors.initials: HO
authors.lastname: Dickinson
authors.affiliation: School of Clinical Medical Sciences, Newcastle University, Newcastle upon Tyne, UK.
authors.forename: Kathryn N
authors.initials: KN
authors.lastname: Parkinson
authors.affiliation: Forschungsgruppe Psychosoziale Gesundheit, Robert Koch Institut, Berlin, Germany.
authors.forename: Ulrike
authors.initials: U
authors.lastname: Ravens-Sieberer
authors.affiliation: Azienda Sanitaria Locale Viterbo, Viale Trento, Viterbo, Italy.
authors.forename: Giorgio
authors.initials: G
authors.lastname: Schirripa
authors.affiliation: Klinik für Kinder- und Jugendmedizin, Universitätsklinikum Schleswig-Holstein, Lübeck, Germany.
authors.forename: Ute
authors.initials: U
authors.lastname: Thyen
authors.affiliation: Institut National de la Santé et de la Recherche Médicale, Université Paul Sabatier, Faculté de Médecine, Toulouse, France.
authors.forename: Catherine
authors.initials: C
authors.lastname: Arnaud
authors.affiliation: Göteborg University, The Queen Silvia Children's Hospital, Göteborg, Sweden.
authors.forename: Eva
authors.initials: E
authors.lastname: Beckung
authors.affiliation: Université Joseph Fournier, SIIM-Pole Exploitation, Grenoble, France.
authors.forename: Jérôme
authors.initials: J
authors.lastname: Fauconnier
authors.affiliation: Enable Ireland, Lavanagh Centre, Ballintemple, Cork, Ireland.
authors.forename: Vicki
authors.initials: V
authors.lastname: McManus
authors.affiliation: National Institute of Public Health, Copenhagen, Denmark.
authors.forename: Susan I
authors.initials: SI
authors.lastname: Michelsen
authors.affiliation: School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
authors.forename: Jackie
authors.initials: J
authors.lastname: Parkes
authors.affiliation: Sir James Spence Institute, Newcastle University, Royal Victoria Infirmary, Newcastle upon Tyne, UK. Electronic address: allan.colver@ncl.ac.uk.
authors.forename: Allan F
authors.initials: AF
authors.lastname: Colver
mesh_terms: 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