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

Publisher: BioMed Central Country of Publication: England NLM ID: 101088677 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-6963 (Electronic) Linking ISSN: 14726963 NLM ISO Abbreviation: BMC Health Serv Res Subsets: MEDLINE

Original Publication: London : BioMed Central, [2001-

Persons with Disabilities*/rehabilitation ; Intellectual Disability*/therapy; Child, Preschool ; Humans ; Delivery of Health Care ; Health Status ; Longitudinal Studies

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.
(© 2024. The Author(s).)

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Investigator: N Boutalbi; L Dany; P Heng; P Julien; I Kemlin; S Lenormand; S Pietra; J Roger; M Valkov; D Willocq
Keywords: Adequacy; Care management; Health consumption; PIMD; Polyhandicap

ClinicalTrials.gov NCT02400528

Date Created: 20240118 Date Completed: 20240124 Latest Revision: 20250103

20250114

PMC10795329

10.1186/s12913-024-10552-9

38238747