EA 3279, CEReSS - Research Centre on Health Services and Quality of Life, Faculté des Sciences Médicale et Paramédicales, Aix Marseille University, 27, Boulevard Jean-Moulin, 13385, Marseille Cedex 05, France.
Fédération des Hôpitaux de Polyhandicap et Multihandicap, San Salvadour Hospital, University Hospital of Paris, 4312 Rte de l'Almanarre, 83400, Hyères, France.
Sci Rep. 2022 Jul 22;12(1):12512. doi: 10.1038/s41598-022-16596-3.
Polyhandicap is characterized by a combination of profound intellectual disability and serious motor deficit, resulting in the extreme restriction of autonomy and communication. The aim of the EVAL-PLH (EVALuation PoLyHandicap) study is to identify the impact of socioeconomic, environmental, and epidemiological determinants on the health status of the persons with polyhandicap and the daily lives of their caregivers. EVAL-PLH is a prospective cohort study. The study involved persons with severe polyhandicap (who were cared for at reeducation centers, residential facilities, and one specialized pediatric/neurological department of a university hospital), their familial caregivers and the institutional caregivers. Data collection included sociodemographics, heath status, and psychocomportemental information. Data have been collected at 2 points (2015-2016 and 2020-2021). The French EVAL-PLH cohort is the first cohort study focusing on persons with polyhandicap, their families, and the health care workers caring for them. The sustainability of the device is essential to assist patients, families, clinicians, and health decision-making authorities in the optimization of care management.
多发性残疾的特点是严重智力残疾和严重运动障碍的结合，导致自主性和沟通能力受到极大限制。EVAL-PLH（评估多发性残疾）研究的目的是确定社会经济、环境和流行病学决定因素对多发性残疾患者的健康状况和他们的照顾者日常生活的影响。EVAL-PLH 是一项前瞻性队列研究。该研究涉及严重多发性残疾的患者（在再教育中心、住所和一家大学附属医院的专门儿科/神经科部门接受护理）、他们的家庭照顾者和机构照顾者。数据收集包括社会人口统计学、健康状况和心理行为信息。数据分两个时间点（2015-2016 年和 2020-2021 年）收集。法国 EVAL-PLH 队列是第一个专注于多发性残疾患者、他们的家庭以及照顾他们的医疗保健工作者的队列研究。该设备的可持续性对于帮助患者、家庭、临床医生和卫生决策机构优化护理管理至关重要。
