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

Marie-Christine Rousseau; Thierry Billette de Villemeur; Sherezad Khaldi-Cherif; Catherine Brisse; Agnès Felce; Karine Baumstarck; Pascal Auquier; French Polyhandicap Group

doi:10.1371/journal.pone.0199986

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

PLoS One. 2018 Jul 6;13(7):e0199986. doi: 10.1371/journal.pone.0199986. eCollection 2018.

Authors

Marie-Christine Rousseau^{1

2}, Thierry Billette de Villemeur^{3

4

5}, Sherezad Khaldi-Cherif⁶, Catherine Brisse⁷, Agnès Felce⁸, Karine Baumstarck², Pascal Auquier²; French Polyhandicap Group

Affiliations

¹ Fédération des Hôpitaux de Polyhandicap et Multihandicap Hôpital San Salvadour, Assistance Publique Hôpitaux de Paris, Hyères, France.
² EA 3279, CEReSS-Health Service Research and Quality of Life Center, Aix Marseille Université, 27 bd Jean Moulin, Marseille, France.
³ Sorbonne Université, UPMC, GRC ConCer-LD and AP-HP, Hôpital Trousseau, Service de Neuropédiatrie-Pathologie du développement, Paris, France.
⁴ Centre de référence des déficits intellectuels de causes rares, Inserm, Paris, France.
⁵ Hôpital de La Roche Guyon, Service de Polyhandicap Pédiatrique, Assistance Publique Hôpitaux de Paris, La Roche Guyon, France.
⁶ Union Générale Caisse Assurance Maladie (UGECAM), Ile de France, Paris, France.
⁷ Comité d'Études, d'Éducation et de Soins Auprès des Personnes Polyhandicapées, Paris, France.
⁸ Hôpital d'Hendaye, Assistance Publique Hôpitaux de Paris, Hendaye, France.

Abstract

Background: 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.

Methods: This 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.

Results: A 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).

Conclusions: This study provides key elements of adequacy of care management modalities for polyhandicapped patients in France.

Trial registration: ClinicalTrials.gov NCT02400528.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Child
Comorbidity
Cross-Sectional Studies
Disabled Persons* / psychology
Disabled Persons* / rehabilitation
Female
France
Humans
Male
Patient Care Management / standards
Patient Care Management / statistics & numerical data*
Program Evaluation*
Rehabilitation Centers / statistics & numerical data

Associated data

ClinicalTrials.gov/NCT02400528

Grants and funding

This work is financially supported by French PREPS (Programme de recherche sur la performance du système de soins, year 2013) and the French Institute National de la Santé et de la Recherche Médicale (INSERM, year 2013): Grant DGOS and INSERM to MCR. The sponsor was represented by Assistance Publique, Hôpitaux de Marseille, France; and its role was to control the appropriateness of ethical and legal considerations. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.