1 Children health, National Institute of Public Health, Det Sundhedsvidenskabelige Fakultet, SDU2 Research Programme on Health and Morbidity in Denmark, National Institute of Public Health, Det Sundhedsvidenskabelige Fakultet, SDU3 Register/Ulykker/Hjerter, National Institute of Public Health, Det Sundhedsvidenskabelige Fakultet, SDU4 School of Nursing & Midwifery, Queen's University Belfast, Medical Biology Centre, 97 Lisburn Road, Belfast BT9 5BN, Ireland.5 Institute of Health and Society, Newcastle University, Royal Victoria Infirmary, Newcastle upon Tyne NE1 4LP, UK.6 Klinik für Kinder und Jugendmedizin, Universitätsklinikum Schleswig-Holstein, Ratzeburger Allee 160, Lübeck 23538, Germany.7 INSERM, U. 1027, Paul-Sabatier University, Toulouse, France.8 The Queen Silvia Children's Hospital, Göteborg University, Göteborg S-41685, Sweden.9 SIIM-Pole Exploitation, Université Joseph Fournier, CHU de Grenoble BP 217, Grenoble cedex 9 38043, France.10 Azienda Sanitaria Locale Viterbo, Vi Enrico Ferri 15, Viterbo 01100, Italy.11 Institut for Klinisk Medicin12 Children health, National Institute of Public Health, Det Sundhedsvidenskabelige Fakultet, SDU13 Register/Ulykker/Hjerter, National Institute of Public Health, Det Sundhedsvidenskabelige Fakultet, SDU
Children with cerebral palsy participate less in everyday activities than children in the general populations. During adolescence, rapid physical and psychological changes occur which may be more difficult for adolescents with impairments. Within the European SPARCLE project we measured frequency of participation of adolescents with cerebral palsy by administering the Questionnaire of Young People's Participation to 667 adolescents with cerebral palsy or their parents from nine European regions and to 4666 adolescents from the corresponding general populations. Domains and single items were analysed using respectively linear and logistic regression. Adolescents with cerebral palsy spent less time with friends and had less autonomy in their daily life than adolescents in the general populations. Adolescents with cerebral palsy participated much less in sport but played electronic games at least as often as adolescents in the general populations. Severity of motor and intellectual impairment had a significant impact on frequency of participation, the more severely impaired being more disadvantaged. Adolescents with an only slight impairment participated in some domains as often as adolescents in the general populations. Regional variation existed. For example adolescents with cerebral palsy in central Italy were most disadvantaged according to decisional autonomy, while adolescents with cerebral palsy in east Denmark and northern England played sports as often as their general populations. Participation is an important health outcome. Personal and environmental predictors of participation of adolescents with cerebral palsy need to be identified in order to design interventions directed to such predictors; and in order to inform the content of services.
European Journal of Paediatric Neurology, 2014, Vol 18, Issue 3, p. 282-294