Trial reportBMC health services research2024
Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study.
Trial report in BMC health services research, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02400528 (Prospective Cohort Follow-up of French Patients With Profound and Multiple Disabilities), which is not on this map. Cited by 6 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Prospective Cohort Follow-up of French Patients With Profound and Multiple Disabilities: Healthcare Pathways and Quality of Life Among Patients and Their Families
Who cites it
6 citing papers in PubMed, 5 citations in OpenAlex.
- Quality of life among individuals with profound intellectual and multiple disabilities: crossed perspectives of institutional caregivers and parents.Health and quality of life outcomes · 2025Trial
- Increased Life Expectancy of People With Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?Journal of applied research in intellectual disabilities : JARID · 2025Trial
- Cancer screening in people with intellectual disability: a scoping review of participation, barriers, facilitators, and improvement strategies within the EUCanScreen initiative.International journal for equity in health · 2026Article
- Institutional language and quality of life in the French medico-social field: from discursive governance to practice-with-many framework.Archives of public health = Archives belges de sante publique · 2026Article
- Young adults with PIMD Polyhandicap in pediatric settings a situation more complex than problematic.Scientific reports · 2026Article
- Care trajectories in children with profound intellectual and multiple disabilities/polyhandicap: a cross-sectional study of the French National Cohort.Frontiers in public health · 2026Article
Corrections and comments
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Authors and funding
12 authors at 5 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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.
methodsThe 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.
resultsAmong 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.).
conclusionsThis 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 registrationNCT02400528, registered 27/03/2015.
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