Mortality in French people with polyhandicap/profound intellectual and multiple disabilities
Abstract
BACKGROUND: In recent decades, progress has been made in the care of people with polyhandicap/profound intellectual and multiple disabilities (PIMD) through a better understanding of the pathophysiology and the development of new care management and rehabilitation strategies adapted to these extreme pathologies. Although there is a lack of knowledge about the health status and care management of the oldest people, a better understanding of the natural course of life of people with polyhandicap/PIMD would consequently allow the optimisation of preventive and curative care management strategies. Few robust data on mortality and life expectancy have been documented for this population in France. Our aims are to estimate the median survival time and assess the factors associated with mortality in people with polyhandicap/PIMD receiving care in France. METHODS: This study included people with polyhandicap/PIMD, followed by the French national cohort 'Eval-PLH' since 2015. These individuals were included in specialised rehabilitation centres and residential institutions. The people included in the first wave of the cohort (2015-2016) were eligible for the present study. Vital status on 1 January 2022 (censoring date) was collected in two ways: (1) spontaneous reporting by the participating centre to the coordinating team and (2) systematic checking on the French national death platform. According to the vital status, survival was calculated in years from the date of birth to the date of death or from the date of birth to the censoring date. The factors associated with mortality were evaluated using the Cox proportional regression hazards model. RESULTS: Data from 780 individuals aged between 3 and 67 years were analysed. At the censoring date, 176 (22.6%) had died, and the mean survival was 52.8 years (95% confidence interval: 51.1-54.5). Mortality was significantly associated with a progressive aetiology, recurrent pulmonary infections, drug-resistant epilepsy and a higher number of medical devices. CONCLUSIONS: This study shows for the first time the survival and impact of factors associated with mortality in people with polyhandicap/PIMD in France.
Related
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- Initiative to federate research contributors: The Polyhandicap REsearch NEtwork PolyRENE
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- Young adults with PIMD Polyhandicap in pediatric settings a situation more complex than problematic
BibTeX
@article{hamouda2026mortality,
title = {{Mortality in French people with polyhandicap/profound intellectual and multiple disabilities}},
author = {I. Hamouda and K. Baumstarck and M.‐a. Aim and A. Beltran Anzola and A. Loundou and T. Billette de Villemeur and L. Boyer and P. Auquier and M.‐c. Rousseau},
journal = {Journal of Intellectual Disability Research},
year = {2026},
month = oct,
doi = {10.1111/jir.13138},
url = {https://hal.science/hal-05774179v1},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Mortality in French people with polyhandicap/profound intellectual and multiple disabilities
AU - I. Hamouda
AU - K. Baumstarck
AU - M.‐a. Aim
AU - A. Beltran Anzola
AU - A. Loundou
AU - T. Billette de Villemeur
AU - L. Boyer
AU - P. Auquier
AU - M.‐c. Rousseau
PY - 2026
DA - 2026/10/01
JO - Journal of Intellectual Disability Research
DO - 10.1111/jir.13138
UR - https://hal.science/hal-05774179v1
AB - BACKGROUND: In recent decades, progress has been made in the care of people with polyhandicap/profound intellectual and multiple disabilities (PIMD) through a better understanding of the pathophysiology and the development of new care management and rehabilitation strategies adapted to these extreme pathologies. Although there is a lack of knowledge about the health status and care management of the oldest people, a better understanding of the natural course of life of people with polyhandicap/PIMD would consequently allow the optimisation of preventive and curative care management strategies. Few robust data on mortality and life expectancy have been documented for this population in France. Our aims are to estimate the median survival time and assess the factors associated with mortality in people with polyhandicap/PIMD receiving care in France. METHODS: This study included people with polyhandicap/PIMD, followed by the French national cohort 'Eval-PLH' since 2015. These individuals were included in specialised rehabilitation centres and residential institutions. The people included in the first wave of the cohort (2015-2016) were eligible for the present study. Vital status on 1 January 2022 (censoring date) was collected in two ways: (1) spontaneous reporting by the participating centre to the coordinating team and (2) systematic checking on the French national death platform. According to the vital status, survival was calculated in years from the date of birth to the date of death or from the date of birth to the censoring date. The factors associated with mortality were evaluated using the Cox proportional regression hazards model. RESULTS: Data from 780 individuals aged between 3 and 67 years were analysed. At the censoring date, 176 (22.6%) had died, and the mean survival was 52.8 years (95% confidence interval: 51.1-54.5). Mortality was significantly associated with a progressive aetiology, recurrent pulmonary infections, drug-resistant epilepsy and a higher number of medical devices. CONCLUSIONS: This study shows for the first time the survival and impact of factors associated with mortality in people with polyhandicap/PIMD in France.
SN - 0964-2633
SN - 1365-2788
ER -