Mortality in French people with polyhandicap/profound intellectual and multiple disabilities

• Published in: Journal of intellectual disability research Vol. 68; no. 8; pp. 985 - 996
• Main Authors: Hamouda, I., Baumstarck, K., Aim, M.‐A., Beltran Anzola, A., Loundou, A., Billette de Villemeur, T., Boyer, L., Auquier, P., Rousseau, M.‐C.
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01.08.2024
• Subjects: associated factors; Attrition (Research Studies); Death & dying; Epilepsy; Etiology; Health care management; Health status; Life expectancy; median survival; Medical equipment; Medical supplies; Mortality; Multiple Disabilities; Multiply disabled people; Pathophysiology; polyhandicap/profound intellectual and multiple disabilities; Preventive medicine; Recurrent; Rehabilitation; Residential institutions; France; mortality; median survival; associated factors; polyhandicap/profound intellectual and multiple disabilities
• ISSN: 0964-2633; 1365-2788; 1365-2788
• DOI: 10.1111/jir.13138

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. Highlights This study is the first to examine and estimate the median survival of people with polyhandicap/profound intellectual and multiple disabilities in France. Data from a national cohort include a large number of people with polyhandicap/profound intellectual and multiple disabilities. The first results from robust mortality data on people with polyhandicap/profound intellectual and multiple disabilities cared for in France. The instability of this disorder and the high number of medical devices are the main factors associated with earlier mortality in people with polyhandicap/profound intellectual and multiple disabilities.