Hamouda I., Rousseau MC., Beltran Anzola A., Aim MA., de Villemeur TB., Auquier P., Baumstarck K.; EVAL-PLH group.
Sci Rep. 2022 Jul 22;12(1):12512. doi: 10.1038/s41598-022-16596-3. PMID: 35869128; PMCID: PMC9305042.
Mediation/Education :
The Éval-PLH (polyhandicap evaluation) cohort is the first study to follow a population of people with multiple disabilities, their carers and their families over time in France. This cohort was set up in 2015 on the initiative and collaboration of Pr Pascal Auquier, a public health physician specializing in epidemiology at the Assistance Publique des Hôpitaux de Marseille, and Pr Thierry Billette, a neuropediatrician at the Trousseau La Roche Guyon Hospital of the Assistance Publique des Hôpitaux de Paris.
The aim of the cohort is to identify the determinants of the health status and quality of life of multi-disabled patients and their caregivers (institutional and family), through the evaluation over time of medical, socio-economic, environmental, family, socio-cognitive, emotional and behavioral data.
A first phase of evaluation was carried out between 2015 and 2016, and a second phase between 2020 and 2021, in different care modalities: follow-up care and rehabilitation centers (SSR), medical-social residential establishments (Comité d’Études, d’Éducation et de Soins Auprès des Personnes polyhandicapées (CESAP)), and specialized pediatrics/neurology service. The results of the first assessment were published in scientific journals and presented at national and international conferences.
The second phase is currently being explored. A third evaluation phase is scheduled for 2025.
A better understanding of care pathways can optimize the management of multi-disabled patients according to their specific needs in terms of age, degree of dependency, severity status and family wishes.
The long-term survival of this cohort remains essential in the eyes of healthcare decision-makers to optimize the care of these patients and their families.
