Mortality in French people with polyhandicap/profound intellectual and multiple disabilities.
French adults with profound ID and multiple disabilities live to a median of 53 years, and recurrent chest infections plus stubborn epilepsy are the clearest red flags.
01Research in Context
What this study did
Mendez et al. (2024) tracked 780 French adults who have profound intellectual and multiple disabilities. The team counted deaths and noted each person’s medical equipment, seizures, and lung infections.
What they found
By 2022, 22.6 % of the group had died. Median age at death was 52.8 years. The biggest risks were repeated chest infections, drug-proof epilepsy, and needing lots of medical devices.
How this fits with other research
McSweeney et al. (2000) saw the same gap: adults with mild ID live as long as the general public, while those with profound ID lose about 20 % of life. I et al. now give the exact number for the most severe group.
Hsieh et al. (2009) add a twist: smaller, friendlier nursing homes cut 10-year death rates even when age and health are the same. I et al. list medical risks; Kelly shows that social factors also count.
Cameranesi et al. (2022) found huge quality-of-life gains when adults left big institutions for small community homes. Put together, the three papers say: move people out of large facilities, watch lung and seizure care, and life span and life quality can both improve.
Why it matters
If you serve adults with profound multiple disabilities, ask the nurse about pneumonia history and seizure meds at every team meeting. Push for smaller homes or day placements with high staff-to-client ratios. These simple checks and placement moves can add years to life and life to years.
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02At a glance
03Original 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.
Journal of intellectual disability research : JIDR, 2024 · doi:10.1111/jir.13138