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

IF 2.1 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research Pub Date : 2024-05-01 DOI:10.1111/jir.13138

I. Hamouda, K. Baumstarck, M.-A. Aim, A. Beltran Anzola, A. Loundou, T. Billette de Villemeur, L. Boyer, the EVAL-PLH group, P. Auquier, M.-C. Rousseau

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引用次数: 0

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.

Abstract Image

查看原文本刊更多论文

法国多重残疾/智力和多重残疾人士的死亡率。

背景：近几十年来，通过更好地了解病理生理学，并针对这些极端病症制定新的护理管理和康复策略，在护理多重残疾/完全智障和多重残疾（PIMD）患者方面取得了进展。虽然对最年长者的健康状况和护理管理缺乏了解，但如果能更好地了解多重残疾/多重智障人士的自然生命过程，就能优化预防和治疗护理管理策略。在法国，有关这一人群死亡率和预期寿命的可靠数据很少。我们的目的是估算在法国接受治疗的多手部畸形/多发性肌萎缩症患者的中位生存时间，并评估与死亡率相关的因素：这项研究纳入了自2015年起由法国国家队列 "Eval-PLH "跟踪调查的多重手部残疾/PIMD患者。这些患者被纳入专业康复中心和寄宿机构。第一波队列（2015-2016 年）中的患者有资格参与本研究。2022年1月1日（剔除日）的生命状态通过两种方式收集：（1）参与中心向协调小组自发报告；（2）在法国国家死亡平台上进行系统检查。根据生命体征，计算从出生日期到死亡日期或从出生日期到剔除日期的生存年数。使用考克斯比例回归危险模型评估了与死亡率相关的因素：结果：分析了 780 名年龄在 3 岁至 67 岁之间儿童的数据。在普查日期，有 176 人（22.6%）死亡，平均存活时间为 52.8 年（95% 置信区间：51.1-54.5）。死亡率与进展性病因、反复肺部感染、耐药性癫痫和较多的医疗设备有明显关系：这项研究首次显示了法国多手畸形/多指并指畸形患者的存活率及其死亡率相关因素的影响。

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来源期刊

Journal of Intellectual Disability Research Multiple-

CiteScore

5.60

自引率

5.60%

发文量

期刊介绍： The Journal of Intellectual Disability Research is devoted exclusively to the scientific study of intellectual disability and publishes papers reporting original observations in this field. The subject matter is broad and includes, but is not restricted to, findings from biological, educational, genetic, medical, psychiatric, psychological and sociological studies, and ethical, philosophical, and legal contributions that increase knowledge on the treatment and prevention of intellectual disability and of associated impairments and disabilities, and/or inform public policy and practice. Expert reviews on themes in which recent research has produced notable advances will be included. Such reviews will normally be by invitation.