abstract: '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.'
affiliation: 'Arnaud, C (Corresponding Author), Toulouse3 Univ, Hop Paule Viguier,
  INSERM, UMR 1027,Team Sphere, 330 Ave Grande Bretagne,TSA 70034, F-31059 Toulouse,
  France.

  Arnaud, C (Corresponding Author), Univ Hosp, Clin Epidemiol Unit, F-31059 Toulouse,
  France.

  Arnaud, Catherine; Duffaut, Carine; Ehlinger, Virginie, Toulouse3 Univ, Hop Paule
  Viguier, INSERM, UMR 1027,Team Sphere, 330 Ave Grande Bretagne,TSA 70034, F-31059
  Toulouse, France.

  Arnaud, Catherine, Univ Hosp, Clin Epidemiol Unit, F-31059 Toulouse, France.

  Fauconnier, Jerome, Univ Grenoble Alpes, Lab TIMC IMAG Equipe ThEMAS, Pavillon Taillefer
  CHU Grenoble CS10217, F-338043 Grenoble, France.

  Schmidt, Silke; Cytera, Chirine, Univ Greifswald, Inst Psychol, Robert Blum Str
  13, D-17489 Greifswald, Germany.

  Himmelmann, Kate, Univ Gothenburg, Inst Clin Sci, Gothenburg, Sweden.

  Marcelli, Marco, Azienda Sanit Locale Viterbo, Child \& Adolescent Neuropsychiat
  Unit Adult Disab, Via Enrico Fermi 15, I-01100 Viterbo, Italy.

  Pennington, Lindsay, Newcastle Univ, Populat Hlth Sci Inst, Newcastle Upon Tyne,
  Tyne \& Wear, England.

  Alvarelhao, Joaquim, Campo Univ Santiago, Univ Aveiro, Sch Hlth Sci, Aveiro, Portugal.

  Cytera, Chirine; Rapp, Marion; Thyen, Ute, Univ Lubeck, Dept Pediat \& Adolescent
  Med, Ratzeburger Allee 160, D-23538 Lubeck, Germany.'
article-number: '254'
author: Arnaud, Catherine and Duffaut, Carine and Fauconnier, Jerome and Schmidt,
  Silke and Himmelmann, Kate and Marcelli, Marco and Pennington, Lindsay and Alvarelhao,
  Joaquim and Cytera, Chirine and Rapp, Marion and Ehlinger, Virginie and Thyen, Ute
author-email: catherine.arnaud@univ-tlse3.fr
author_list:
- family: Arnaud
  given: Catherine
- family: Duffaut
  given: Carine
- family: Fauconnier
  given: Jerome
- family: Schmidt
  given: Silke
- family: Himmelmann
  given: Kate
- family: Marcelli
  given: Marco
- family: Pennington
  given: Lindsay
- family: Alvarelhao
  given: Joaquim
- family: Cytera
  given: Chirine
- family: Rapp
  given: Marion
- family: Ehlinger
  given: Virginie
- family: Thyen
  given: Ute
da: '2023-09-28'
doi: 10.1186/s12883-021-02263-z
eissn: 1471-2377
files: []
journal: BMC NEUROLOGY
keywords: 'Cerebral palsy; Participation; Quality of life; Health care; Employment;

  Adulthood'
keywords-plus: 'FUNCTION CLASSIFICATION-SYSTEM; HEALTH; CHILDREN; ADOLESCENTS;

  RELIABILITY; VALIDITY; TRAJECTORIES; INDIVIDUALS; DISABILITY; OUTCOMES'
language: English
month: JUN 30
number: '1'
number-of-cited-references: '72'
orcid-numbers: 'ARNAUD, Catherine/0000-0002-4002-802X

  Schmidt, Silke/0000-0002-4194-1937

  Pennington, Lindsay/0000-0002-4540-2586'
papis_id: a5b077f4d4f3ac5fb7a1562c9db8756e
ref: Arnaud2021determinantsparticip
researcherid-numbers: 'Alvarelhão, José/M-4142-2013

  marcelli, marco/AGR-6853-2022

  ARNAUD, Catherine/AAC-5646-2019

  '
times-cited: '3'
title: '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'
type: article
unique-id: WOS:000671199500001
usage-count-last-180-days: '0'
usage-count-since-2013: '2'
volume: '21'
web-of-science-categories: Clinical Neurology
year: '2021'