Adequacy of care management of patients with polyhandicap in the French health system: A study of 782 patients.

Marie-Christine Rousseau,Agnès Felce,Pascal Auquier,Sherezad Khaldi-Cherif,Karine Baumstarck,Thierry Billette De Villemeur,Catherine Brisse,Umberto Simeoni

doi:10.1371/journal.pone.0199986

Abstract

BackgroundThe aims of this study were 1) to describe the health profiles and care management of polyhandicapped patients according to 2 modalities, specialized rehabilitation centers (SRC) and residential facilities (RF), and 2) to estimate the adequacy of care management of these patients.MethodsThis was an 18-month cross-sectional study including patients with a combination of severe motor deficiency and profound intellectual impairment. The patients were from 4 SRC and 9 RF. The following data were collected: sociodemographics, health status, care management, and adequacy of care management.ResultsA total of 782 patients were included: 410 (52%) were cared for in SRC and 372 (48%) in RF. Global objective adequacy (health severity and age category) was higher for patients cared for in SRC compared with patients cared for in RF (57 vs. 44%, p< = 10−3). Global subjective adequacy (self-perception of the referring physician and request of change in structure) was higher for patients cared for in SRC in comparison with patients cared for in RF (98 vs. 92%, p< = 10−3).ConclusionsThis study provides key elements of adequacy of care management modalities for polyhandicapped patients in France.Trial registrationClinicalTrials.gov NCT02400528

Highlights

Polyhandicap is a complex disability condition corresponding to a chronic affliction occurring in an immature brain, leading to a combination of profound intellectual disability and serious motor deficit, resulting in extreme restriction of autonomy and communication
Global objective adequacy was higher for patients cared for in specialized rehabilitation centers (SRC) compared with patients cared for in residential facilities (RF) (57 vs. 44%, p< = 10−3)
This study provides key elements of adequacy of care management modalities for polyhandicapped patients in France

Summary

Introduction

Polyhandicap is a complex disability condition corresponding to a chronic affliction occurring in an immature brain, leading to a combination of profound intellectual disability and serious motor deficit, resulting in extreme restriction of autonomy and communication This definition was adopted by the French scientific community and by French law (French Law n 89– 798, 1989, October 27th, health policy of care disability). The French health system allows these patients to benefit from three main care management modalities: specialized rehabilitation centers (SRC), residential facilities (RF), and home care (HC) [4]. The RF offer a high level of psychosocial education and a lower level of medical care For these two modalities, units are dedicated for adult and pediatric populations. The aims of this study were 1) to describe the health profiles and care management of polyhandicapped patients according to 2 modalities, specialized rehabilitation centers (SRC) and residential facilities (RF), and 2) to estimate the adequacy of care management of these patients

Objectives

Methods

Results

Conclusion