The French EVAL-PLH cohort of persons with polyhandicap

Hamouda, Ilyes; Anzola, Any Beltran; Villemeur, Thierry Billette de; Rousseau, Marie-Christine; Khaldi-Cherif, Sherezad; Maincent, K.; Felce, A; Baumstarck, Karine; Auquier, Pascal; Dany, Lionel; Beltran, Any; Aim, Marie-Anastasie; Boutalbi, Narjess; Kemlin, Isabelle; Roger, Julie; Julien, Patrick; Heng, Ponha; Willocq, D.; Valkov, Maria; Pietra, S.; Lenormand, Stéphane; Lind, Katia

doi:10.1038/s41598-022-16596-3

Cited by 4 publications

(3 citation statements)

References 29 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The study used data from the French cohort (EVALuation PoLyHandicap EVAL-PLH) of individuals with severe polyhandicap. Details of the study protocol of the cohort were published elsewhere [ 10 ]. Data were collected at 2 points: the first wave (Time 1, T1) was collected in 2015 and 2016, and the second wave (Time 2, T2) was collected in 2020 and 2021.…”

Section: Methodsmentioning

confidence: 99%

Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study

Baumstarck,

Hamouda,

Aim

et al. 2024

BMC Health Serv Res

Self Cite

View full text Add to dashboard Cite

Background The care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption. Methods The longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015–2016 and wave 2 (T2) in 2020–2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care. Results Among the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.). Conclusions This study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals. Trial registration NCT02400528, registered 27/03/2015.

show abstract

Section: Methodsmentioning

confidence: 99%

Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study

Baumstarck,

Hamouda,

Aim

et al. 2024

BMC Health Serv Res

Self Cite

View full text Add to dashboard Cite

show abstract

“…The French national cohort of people with severe polyhandicap/PIMD, 'EVAL-PLH', initiated in 2015 (Hamouda et al 2022), describes the evolution over time of the health status of people with polyhandicap/PIMD and the daily lives of their natural and institutional caregivers. A description of the EVAL-PLH cohort has been previously published (Hamouda et al 2022).…”

Section: Methodsmentioning

confidence: 99%

“…The main inclusion criteria were people with polyhandicap/PIMD defined by experiencing a combination of motor deficiency (tetraparesis, hemiparesis, paraparesis, extrapyramidal syndrome, cerebellar syndrome and neuromuscular problems) and profound intellectual impairment [intelligence quotient (IQ) < 40] associated with life dependence [Functional Independence Measure (FIM) < 55] and restricted mobility [Gross Motor Function Classification System (GMFCS) III, IV and V] aged at inclusion for more than 3 years (Hamouda et al . 2022).…”

Section: Methodsmentioning

confidence: 99%

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

Hamouda,

Baumstarck,

Aim

et al. 2024

J intellect Disabil Res

View full text Add to dashboard Cite

BackgroundIn 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.MethodsThis 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.ResultsData 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.ConclusionsThis study shows for the first time the survival and impact of factors associated with mortality in people with polyhandicap/PIMD in France.

show abstract

Verticalisation ou mise en charge adaptée : réflexions et perspectives dans la Paralysie Cérébrale - Étude de cas

Taher¹

2022

Motricité Cérébrale

View full text Add to dashboard Cite

The French EVAL-PLH cohort of persons with polyhandicap

Cited by 4 publications

References 29 publications

Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study

Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study

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

Verticalisation ou mise en charge adaptée : réflexions et perspectives dans la Paralysie Cérébrale - Étude de cas

Contact Info

Product

Resources

About