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. 2024 Oct 5;14(1):23197.
doi: 10.1038/s41598-024-74102-3.

Health status of individuals with polyhandicap across a 5-year follow-up period

Marie-Christine Rousseau  1   2 , Ilyes Hamouda  2   3 , Marie-Anastasie Aim  4 , Any Beltran Anzola  3 , Kim Maincent  5 , Katia Lind  6 , Agnès Felce  7 , Pascal Auquier  2   3 , Thierry Billette De Villemeur  8   9 , Karine Baumstarck  10   11 ; EVAL-PLH Group
Collaborators, Affiliations

Health status of individuals with polyhandicap across a 5-year follow-up period

Marie-Christine Rousseau et al. Sci Rep. .

Abstract

The present longitudinal study examined a large sample of individuals with PIMD/Polyhandicap to: (i) describe the evolution over time of the health status in terms of severity, (ii) identify the potential predictors of health status change. This study used the data of the French national EVAL-PLH cohort. Inclusion criteria were: individuals with PIMD/Polyhandicap; age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old. The definition of the change in health status over the 5-year period was derived from the Polyhandicap Severity Scale. Among the 875 individuals included in 2015-2016, 492 (56.2%) individuals were assessed in 2020-2021. According to the definition, 68.8% (n = 309), 64.7% (n = 310), and 80.2% (n = 368) of the individuals presented with a worsened or stable severity status based on the global score, the abilities score, and the comorbidities score, respectively. Compared with the individuals with a non-worsened health status (global score), the individuals with a stable or worsened health status were more likely to receive care in specialized rehabilitation centres, more likely to have an antenatal or progressive aetiology, and more likely to have a higher dependency level. The current study provides a robust perspective of the worsened health among persons with PIMD/Polyhandicap over time.

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Conflict of interest statement

The authors declare no competing interests.

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References

    1. Nakken, H. & Vlaskamp, C. A need for a taxonomy for profound intellectual and multiple disabilities. J. Policy Pract. Intellect. Disabil.4, 83–87 (2007).
    1. Rousseau, M.-C., Winance, M. & Baumstarck, K. Polyhandicap, profound intellectual multiple disabilities: Concept and definition of a highly specific public health issue. Rev. Epidemiol. Sante Publique71, 102184 (2023). - PubMed
    1. Billette de Villemeur, T. et al. Comment la loi Leonetti s’applique t’elle à l’enfant polyhandicapé?. Med. Therap. Pediatrie15, 34–37 (2012).
    1. Rousseau, M. C., Humbertclaude, E., Lauksecker, C., Dagois, J. F. & Billette de Villemeur, T. Le parcours de santé et la prise en charge de la personne polyhandicapée en Italie et en Norvège. Éthique Santé16, 100–110 (2019).
    1. Hamouda, I. et al. Development and initial validation of the quality of life questionnaire for persons with polyhandicap (PolyQoL). Ann. Phys. Rehabil. Med.66, 101672 (2023). - PubMed

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