174 lines
5.7 KiB
YAML
174 lines
5.7 KiB
YAML
abstract: 'Background Effective inclusion in society for young people with
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disabilities is increasingly seen as generating opportunities for
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self-development, and improving well-being. However, significant
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barriers remain in the vast majority of activities meaningful for young
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adults. Research argues that various personal (disabilities, health) and
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environmental (access to the resources needed, accessible environment,
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discrimination, lack of personal economic independence) factors
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contribute to limited participation. However, previous studies conducted
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in young people with cerebral palsy (CP) mainly investigated the
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transition period to adulthood, and did not fully consider the whole
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range of impairment severity profiles or environmental barriers. In this
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study, we will use the follow-up of the SPARCLE cohort and a comparison
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group from the general population (1) to investigate the impact of the
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environment on participation and quality of life of young adults with
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CP, (2) to determine predictors of a successful young adulthood in
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educational, professional, health and social fields, (3) to compare
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quality of life and frequency of participation in social, work and
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recreational activities with the general population, (4) to document on
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participation and quality of life in those with severe disabilities.
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Methods The SPARCLE3 study has a combined longitudinal and
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cross-sectional design. Young adults with CP aged 22 to 27 years in 6
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European regions previously enrolled in the SPARCLE cohort or newly
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recruited will be invited to self-complete a comprehensive set of
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questionnaires exploring participation (daily life and discretionary
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activities), health-related quality of life, body function, personal
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factors (health, personal resources), and contextual factors
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(availability of needed environmental items, family environment,
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services provision) during home visits supervised by trained
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researchers. Proxy-reports or adapted questionnaires will be used for
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those with the most severe impairments. The recruitment of a large group
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from the general population (online survey) will enable to identify life
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areas where the discrepancies between young people with CP and their
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able-bodied peers are the most significant. Discussion This study will
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help identify to what extent disabilities and barriers in environment
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negatively affect participation and quality of life, and how previous
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valued experiences during childhood or adolescence might modulate these
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effects.'
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affiliation: 'Arnaud, C (Corresponding Author), Toulouse3 Univ, Hop Paule Viguier,
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INSERM, UMR 1027,Team Sphere, 330 Ave Grande Bretagne,TSA 70034, F-31059 Toulouse,
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France.
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Arnaud, C (Corresponding Author), Univ Hosp, Clin Epidemiol Unit, F-31059 Toulouse,
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France.
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Arnaud, Catherine; Duffaut, Carine; Ehlinger, Virginie, Toulouse3 Univ, Hop Paule
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Viguier, INSERM, UMR 1027,Team Sphere, 330 Ave Grande Bretagne,TSA 70034, F-31059
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Toulouse, France.
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Arnaud, Catherine, Univ Hosp, Clin Epidemiol Unit, F-31059 Toulouse, France.
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Fauconnier, Jerome, Univ Grenoble Alpes, Lab TIMC IMAG Equipe ThEMAS, Pavillon Taillefer
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CHU Grenoble CS10217, F-338043 Grenoble, France.
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Schmidt, Silke; Cytera, Chirine, Univ Greifswald, Inst Psychol, Robert Blum Str
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13, D-17489 Greifswald, Germany.
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Himmelmann, Kate, Univ Gothenburg, Inst Clin Sci, Gothenburg, Sweden.
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Marcelli, Marco, Azienda Sanit Locale Viterbo, Child \& Adolescent Neuropsychiat
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Unit Adult Disab, Via Enrico Fermi 15, I-01100 Viterbo, Italy.
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Pennington, Lindsay, Newcastle Univ, Populat Hlth Sci Inst, Newcastle Upon Tyne,
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Tyne \& Wear, England.
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Alvarelhao, Joaquim, Campo Univ Santiago, Univ Aveiro, Sch Hlth Sci, Aveiro, Portugal.
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Cytera, Chirine; Rapp, Marion; Thyen, Ute, Univ Lubeck, Dept Pediat \& Adolescent
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Med, Ratzeburger Allee 160, D-23538 Lubeck, Germany.'
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article-number: '254'
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author: Arnaud, Catherine and Duffaut, Carine and Fauconnier, Jerome and Schmidt,
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Silke and Himmelmann, Kate and Marcelli, Marco and Pennington, Lindsay and Alvarelhao,
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Joaquim and Cytera, Chirine and Rapp, Marion and Ehlinger, Virginie and Thyen, Ute
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author-email: catherine.arnaud@univ-tlse3.fr
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author_list:
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- family: Arnaud
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given: Catherine
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- family: Duffaut
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given: Carine
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- family: Fauconnier
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given: Jerome
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- family: Schmidt
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given: Silke
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- family: Himmelmann
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given: Kate
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- family: Marcelli
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given: Marco
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- family: Pennington
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given: Lindsay
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- family: Alvarelhao
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given: Joaquim
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- family: Cytera
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given: Chirine
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- family: Rapp
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given: Marion
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- family: Ehlinger
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given: Virginie
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- family: Thyen
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given: Ute
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da: '2023-09-28'
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doi: 10.1186/s12883-021-02263-z
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eissn: 1471-2377
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files: []
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journal: BMC NEUROLOGY
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keywords: 'Cerebral palsy; Participation; Quality of life; Health care; Employment;
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Adulthood'
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keywords-plus: 'FUNCTION CLASSIFICATION-SYSTEM; HEALTH; CHILDREN; ADOLESCENTS;
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RELIABILITY; VALIDITY; TRAJECTORIES; INDIVIDUALS; DISABILITY; OUTCOMES'
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language: English
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month: JUN 30
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number: '1'
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number-of-cited-references: '72'
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orcid-numbers: 'ARNAUD, Catherine/0000-0002-4002-802X
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Schmidt, Silke/0000-0002-4194-1937
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Pennington, Lindsay/0000-0002-4540-2586'
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papis_id: a5b077f4d4f3ac5fb7a1562c9db8756e
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ref: Arnaud2021determinantsparticip
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researcherid-numbers: 'Alvarelhão, José/M-4142-2013
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marcelli, marco/AGR-6853-2022
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ARNAUD, Catherine/AAC-5646-2019
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'
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times-cited: '3'
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title: 'Determinants of participation and quality of life of young adults with cerebral
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palsy: longitudinal approach and comparison with the general population - SPARCLE
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3 study protocol'
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type: article
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unique-id: WOS:000671199500001
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usage-count-last-180-days: '0'
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usage-count-since-2013: '2'
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volume: '21'
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web-of-science-categories: Clinical Neurology
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year: '2021'
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