Author:
Hamouda Ilyes,Rousseau Marie-Christine,Beltran Anzola Any,Aim Marie-Anastasie,de Villemeur Thierry Billette,Auquier Pascal,Baumstarck Karine,de Villemeur Thierry Billette,Rousseau Marie-Christine,Khaldi-Cherif Sherezad,Maincent Kim,Felce Agnès,Baumstarck Karine,Auquier Pascal,Dany Lionel,Beltran Any,Hamouda Ilyes,Aim Marie-Anastasie,Boutalbi Narjess,Kemlin Isabelle,Roger Julie,Julien Patrick,Heng Ponha,Willocq Daniel,Valkov Maria,Pietra Stéphane,Lenormand Stéphane,Lind Katia,
Abstract
AbstractPolyhandicap is characterized by a combination of profound intellectual disability and serious motor deficit, resulting in the extreme restriction of autonomy and communication. The aim of the EVAL-PLH (EVALuation PoLyHandicap) study is to identify the impact of socioeconomic, environmental, and epidemiological determinants on the health status of the persons with polyhandicap and the daily lives of their caregivers. EVAL-PLH is a prospective cohort study. The study involved persons with severe polyhandicap (who were cared for at reeducation centers, residential facilities, and one specialized pediatric/neurological department of a university hospital), their familial caregivers and the institutional caregivers. Data collection included sociodemographics, heath status, and psychocomportemental information. Data have been collected at 2 points (2015-2016 and 2020-2021). The French EVAL-PLH cohort is the first cohort study focusing on persons with polyhandicap, their families, and the health care workers caring for them. The sustainability of the device is essential to assist patients, families, clinicians, and health decision-making authorities in the optimization of care management.
Publisher
Springer Science and Business Media LLC
Reference30 articles.
1. Billette de Villemeur, T. et al. Comment la loi Leonetti s’applique t’elle à l’enfant polyhandicapé?. Med. Therap. Pediatrie 15(1), 34–37 (2012).
2. Rousseau, M. C. et al. Aetiologies, comorbidities and causes of death in a population of 133 patients with polyhandicaps cared for at specialist rehabilitation centres. Brain Inj. 29(7–8), 837–42 (2015).
3. Rumeau-Rouquette, C. et al. Definition and prevalence of school-age multi-handicaps. Arch. Pediatr. 5(7), 739–44 (1998).
4. Ben Salah, F. Z. & Dzirib, C. Polyhandicap in Tunisia: Which peculiarities?. J. Réadaptation Médicale 34(4), 204–208 (2014).
5. Arvio, M. & Sillanpaa, M. Prevalence, aetiology and comorbidity of severe and profound intellectual disability in Finland. J. Intellect. Disabil. Res. 47(Pt 2), 108–12 (2003).
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