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Study protocol: Determinants of participation and quality of life of adolescents with cerebral palsy: a longitudinal study (SPARCLE2)

Lookup NU author(s): Emeritus Professor Allan ColverORCiD, Dr Heather Dickinson



Background: Children and adults with impairments such as cerebral palsy have lower participation in life situations than able-bodied people. Less is known about their subjective perception of their lives, called their quality of life. During adolescence, rapid physical and psychological changes occur; although these may be more difficult for disabled than for able-bodied adolescents, little research has examined the lives of disabled adolescents. In 2003-4 a European Union funded project, SPARCLE, visited 818 children aged 8-12 years with cerebral palsy, sampled from population-based registers in nine European regions. The quality of life reported by these disabled children was similar to that of the general population but their participation was lower; levels of participation varied between countries even for children with similar severity of cerebral palsy. We are currently following up these children, now aged 13-17 years, to identify (i) to what extent contemporaneous factors (pain, impairment, psychological health and parental stress) predict their participation and quality of life, (ii) what factors modify how participation and quality of life at age 8-12 years are associated with participation and quality of life in adolescence, and (iii) whether differences between European countries in participation and quality of life can be explained by variations in environmental factors. Methods/Design: Trained researchers will visit families to administer questionnaires to capture the adolescents' type and severity of impairment, socio-demographic characteristics, participation, quality of life, psychological health, pain, environmental access and parental stress. We will use multivariable models (linear, logistic or ordinal) to assess how adolescent participation, quality of life, psychological health, pain, environmental access and parental stress, vary with impairment and socio-demographic characteristics and, where possible, how these outcomes compare with general population data. For participation and quality of life, longitudinal analyses will assess to what extent these are predicted by corresponding levels in childhood and what factors modify this relationship. Structural equation modelling will be used to identify indirect relationships mediated by other factors.

Publication metadata

Author(s): Colver AF, Dickinson HO, SPARCLE Group

Publication type: Article

Publication status: Published

Journal: BMC Public Health

Year: 2010

Volume: 10

Issue: 1

Pages: 280

Print publication date: 26/05/2010

Date deposited: 23/08/2010

ISSN (print):

ISSN (electronic): 1471-2458

Publisher: BioMed Central Ltd.


DOI: 10.1186/1471-2458-10-280

PubMed id: 20504349


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Funder referenceFunder name
Fondazione Carivit, Viterbo
Ludvig and Sara Elsass Foundation: The Spastic Society
Ludvig and Sara Elsass Foundation: The Spastic Society; Vanforefonden
Cooperativa Sociale "Gli Anni in Tasca", Viterbo
Folke Bernadotte Foundation
Goteborg University
Riksforbundet for Rorelsehindrade Barn och Ungdomar
E40-2009Medical Faculty of University of Luebeck
WT 086315 A1AWellcome Trust