title: Predictors of participation of adolescents with cerebral palsy: A European multi-centre longitudinal study.
abstract: We investigated whether childhood factors that are amenable to intervention (parenting stress, child psychological problems and pain) predicted participation in daily activities and social roles of adolescents with cerebral palsy (CP). We randomly selected 1174 children aged 8-12 years from eight population-based registers of children with CP in six European countries; 743 (63%) agreed to participate. One further region recruited 75 children from multiple sources. These 818 children were visited at home at age 8-12 years, 594 (73%) agreed to follow-up at age 13-17 years. We used the following measures: parent reported stress (Parenting Stress Index Short Form), their child's psychological difficulties (Strength and Difficulties Questionnaire) and frequency and severity of pain; either child or parent reported the child's participation (LIFE Habits questionnaire). We fitted a structural equation model to each of the participation domains, regressing participation in childhood and adolescence on parenting stress, child psychological problems and pain, and regressing adolescent factors on the corresponding childhood factors; models were adjusted for impairment, region, age and gender. Pain in childhood predicted restricted adolescent participation in all domains except Mealtimes and Communication (standardized total indirect effects β -0.05 to -0.18, 0.01<p<0.05 to p<0.001, depending on domain). Psychological problems in childhood predicted restricted adolescent participation in all domains of social roles, and in Personal Care and Communication (β -0.07 to -0.17, 0.001<p<0.01 to p<0.001). Parenting stress in childhood predicted restricted adolescent participation in Health Hygiene, Mobility and Relationships (β -0.07 to -0.18, 0.001<p<0.01 to p<0.001). These childhood factors predicted adolescent participation largely via their effects on childhood participation; though in some domains early psychological problems and parenting stress in childhood predicted adolescent participation largely through their persistence into adolescence. We conclude that participation of adolescents with CP was predicted by early modifiable factors related to the child and family. Interventions for reduction of pain, psychological difficulties and parenting stress in childhood are justified not only for their intrinsic value, but also for probable benefits to childhood and adolescent participation.
authors.affiliation: UJF Grenoble 1/CNRS/CHU de Grenoble/TIMC-IMAG UMR 5525/Themas, Grenoble F-38041, France. Electronic address: vmdang@chu-grenoble.fr.
authors.forename: Van Mô
authors.initials: VM
authors.lastname: Dang
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: Institute of Health and Society, Newcastle University, Royal Victoria Infirmary, Newcastle upon Tyne NE1 4LP, UK. Electronic address: heather.dickinson@ncl.ac.uk.
authors.forename: Heather O
authors.initials: HO
authors.lastname: Dickinson
authors.affiliation: AUSL 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, Oster Farimagsgade 5, 1353 Copenhagen, Denmark. Electronic address: sim@niph.dk.
authors.forename: Susan I
authors.initials: SI
authors.lastname: Michelsen
authors.affiliation: School of Nursing & Midwifery, Queen's University Belfast, 21 Stranmillis Road, Belfast BT9 5AF, UK. Electronic address: jackieparkes@btinternet.com.
authors.forename: Jackie
authors.initials: J
authors.lastname: Parkes
authors.affiliation: Institute of Health and Society, Newcastle University, Royal Victoria Infirmary, Newcastle upon Tyne NE1 4LP, UK. Electronic address: kathryn.parkinson@newcastle.ac.uk.
authors.forename: Kathryn
authors.initials: K
authors.lastname: Parkinson
authors.affiliation: Klinik für Kinder und Jugendmedizin, Universität Lübeck, Ratzeburger Allee 160, 23538 Lübeck, Germany. Electronic address: marion.rapp@gmx.de.
authors.forename: Marion
authors.initials: M
authors.lastname: Rapp
authors.affiliation: INSERM, UMR 1027, Paul Sabatier University, Toulouse, France; Purpan, Clinical Epidemiology Unit, Toulouse, France. Electronic address: catherine.arnaud@univ-tlse3.fr.
authors.forename: Catherine
authors.initials: C
authors.lastname: Arnaud
authors.affiliation: Göteborg University, The Queen Silvia Children's Hospital, S-41685 Göteborg, Sweden. Electronic address: malin.nystrand@vgregion.se.
authors.forename: Malin
authors.initials: M
authors.lastname: Nystrand
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
keywords: Adolescence; Cerebral palsy; Longitudinal predictors; Participation