title: Predictors of parent-reported quality of life of adolescents with cerebral palsy: A longitudinal study.
abstract: OBJECTIVE
  Parent-reporting is needed to examine Quality of Life (QoL) of children with cerebral palsy (CP) across all severities. This study examines whether QoL changes between childhood and adolescence, and what predicts adolescent QoL.
  
  
  METHODS
  SPARCLE is a European cohort study of children with CP, randomly sampled from population databases. Of 818 8-12-year-olds joining the study, 594 (73%) were revisited as 13-17-year-olds. The subject of this report is the 551 (316 boys, 235 girls) where the same parent reported QoL on both occasions using KIDSCREEN-52 (transformed Rasch scale, mean 50, SD 10 per domain). Associations were assessed using linear regression.
  
  
  RESULTS
  Between childhood and adolescence, average QoL reduced in six domains (1.3-3.8 points, p<0.01) and was stable in three (Physical wellbeing, Autonomy, Social acceptance). Socio-demographic factors had little predictive value. Childhood QoL was a strong predictor of all domains of adolescent QoL. Severe impairments of motor function, IQ or communication predicted higher adolescent QoL on some domains; except that severe motor impairment predicted lower adolescent QoL on the Autonomy domain. More psychological problems and higher parenting stress in childhood and their worsening by adolescence predicted lower QoL in five and eight domains respectively; contemporaneous pain in seven domains. The final model explained 30%-40% of variance in QoL, depending on domain.
  
  
  CONCLUSIONS
  In general, impairment severity and socio-demographic factors were not predictors of lower adolescent QoL. However, pain, psychological problems and parenting stress were predictors of lower adolescent QoL in most domains. These are modifiable factors and addressing them may improve adolescent QoL.
authors.affiliation: Department of Pediatrics, University of Luebeck, Ratzeburger Allee 160, 23538 Luebeck, Germany. Electronic address: marion.rapp@gmx.de.
authors.forename: Marion
authors.initials: M
authors.lastname: Rapp
authors.affiliation: Institute of Cancer Epidemiology, University of Luebeck, Ratzeburger Allee 160, 23538 Luebeck, Germany. Electronic address: nora.eisemann@uksh.de.
authors.forename: Nora
authors.initials: N
authors.lastname: Eisemann
authors.affiliation: INSERM, UMR 1027, Paul Sabatier University, Purpan, Clinical Epidemiology Unit, Toulouse, France. Electronic address: catherine.arnaud@univ-tlse3.fr.
authors.forename: Catherine
authors.initials: C
authors.lastname: Arnaud
authors.affiliation: INSERM, UMR 1027, Paul Sabatier University, Toulouse, France. Electronic address: virginie.ehlinger@inserm.fr.
authors.forename: Virginie
authors.initials: V
authors.lastname: Ehlinger
authors.affiliation: UJF-Grenoble 1/CNRS/CHU de Grenoble/TIMC-IMAG UMR 5525/Themas, Grenoble F-38041, France. Electronic address: jerome.fauconnier@imag.fr.
authors.forename: Jérôme
authors.initials: J
authors.lastname: Fauconnier
authors.affiliation: USL Viterbo, Via Enrico Fermi 15, 01100 Viterbo, Italy. Electronic address: marco.marcelli@asl.vt.it.
authors.forename: Marco
authors.initials: M
authors.lastname: Marcelli
authors.affiliation: National Institute of Public Health, University of Southern Denmark, Oster Farimagsgade 5, 1353 Copenhagen, Denmark. Electronic address: sim@si-folkesundhed.dk.
authors.forename: Susan I
authors.initials: SI
authors.lastname: Michelsen
authors.affiliation: Gothenburg University, The Queen Silvia Children's Hospital, S-41685 Gothenburg, Sweden. Electronic address: malin.nystrand@vgregion.se.
authors.forename: Malin
authors.initials: M
authors.lastname: Nystrand
authors.affiliation: Institute of Health and Society, Newcastle University, Royal Victoria Infirmary, Newcastle upon Tyne NE1 4LP, UK. Electronic address: allan.colver@ncl.ac.uk.
authors.forename: Allan
authors.initials: A
authors.lastname: Colver
authors.affiliation: Department of Pediatrics, University of Luebeck, Ratzeburger Allee 160, 23538 Luebeck, Germany. Electronic address: ute.thyen@uksh.de.
authors.forename: Ute
authors.initials: U
authors.lastname: Thyen
mesh_terms: D000293:Adolescent; D002547:Cerebral Palsy / Q000503:physiopathology* / Q000523:psychology; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D001523:Mental Disorders / Q000453:epidemiology; D010146:Pain / Q000453:epidemiology; D016487:Parenting / Q000523:psychology; D010290:Parents; D026684:Personal Autonomy; D012929:Psychological Distance; D011788:Quality of Life; D012720:Severity of Illness Index; D013315:Stress, Psychological / Q000453:epidemiology / Q000523:psychology; D011795:Surveys and Questionnaires
keywords: Adolescent; Cerebral palsy; Parent-reported; Predictors; Quality of life