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Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population - SPARCLE 3 study protocol

Lookup NU author(s): Professor Lindsay Pennington



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


BACKGROUND: Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. METHODS: The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. DISCUSSION: This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

Publication metadata

Author(s): Arnaud C, Duffaut C, Fauconnier J, Schmidt S, Himmelmann K, Marcelli M, Pennington L, Alvarelhao J, Cytera C, Rapp M, Ehlinger V, Thyen U

Publication type: Article

Publication status: Published

Journal: BMC Neurology

Year: 2021

Volume: 21

Issue: 1

Online publication date: 30/06/2021

Acceptance date: 02/06/2021

Date deposited: 03/08/2021

ISSN (electronic): 1471-2377

Publisher: BioMed Central Ltd.


DOI: 10.1186/s12883-021-02263-z

PubMed id: 34193065


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Funder referenceFunder name
Deutsche Forschungsgemeinschaft (DFG) and the French Agence Nationale de la Recherche (ANR) [DFG-ANR N° 316684170]
Fondazione Carivit in Italy
Federação das Associações Portuguesas de Paralisia Cerebral e Santa Casa da Misericórdia de Lisboa in Portugal
Newcastle University Institute for Social Renewal supported the development of EAEQ.
Sunnerdahls Handikappfond, the Swedish state under the agreement between Swedish government and the country councils, the ALF-agreement (ALFGBG-726001) in Sweden