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

Abstract

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.

Keywords: Adequacy; Care management; Health consumption; PIMD; Polyhandicap.

Fig. 1

Evolution of objective adequacy of care setting over the 5-year period. Adequacy for age: Adequacy was defined as an individual under 18 years old who was cared for in a unit dedicated to children or by an individual over 18 years old who was cared for in a unit dedicated to adults. Adequacy for health status severity: Adequacy was defined by an individual with a severe health status who was cared for in a specialized rehabilitation centre or by a patient with less severe health status who was cared for in residential facilities. Combination of age adequacy and severity adequacy: Adequacy was defined as age adequacy and severity adequacy. T1: 2015–2016 assessment; T2: 2020–2021 assessment

Fig. 2

Evolution of subjective adequacy of care setting over the 5-year period. Adequacy for medical care: Adequacy was defined based on the self-perception of the referring physician of the individual about medical care provided in the setting. Adequacy for educational care: Adequacy was defined based on the self-perception of the referring physician of the individual about educational care provided in the setting. Combination of medical adequacy and educational adequacy: Adequacy was defined as adequate medical care and adequate educational care. T1: 2015–2016 assessment; T2: 2020–2021 assessment

Fig. 3

Gap between prescribed and performed paramedical sessions (N = 619). Gap prescribed/performed sessions: number of prescribed sessions minus number of performed sessions (D); no gap: D < 3, gap (3–10 sessions):3 < = D < = 10; large gap: D > 10. SRC specialized rehabilitation centre; RF residential facilities