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, Marie-Christine Rousseau, Thierry Billette de Villemeur, Sherezad Khaldi-Cherif, Catherine Brisse, Agnès Felce, Karine Baumstarck, Pascal Auquier, French Polyhandicap Group
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.
Conflict of interest statement
The authors have declared that no competing interests exist.
Figures
References
- Billette de Villemeur T, Brisse C, Afenjar A, Isapof A, Humberclaude E, Matthieu S. (2012) Comment la loi Leonetti s'applique t'elle à l'enfant polyhandicapé? Med Therap Pediatrie 15: 34–37.
- Rumeau-Rouquette C, du Mazaubrun C, Cans C, Grandjean H (1998) [Definition and prevalence of school-age multi-handicaps]. Arch Pediatr 5: 739–744.
- Juzeau D, Cachera I, Vallee L (1999) [Epidemiologic study of multihandicapped children in the north of France]. Arch Pediatr 6: 832–836.
- Rousseau MC, Mathieu S, Brisse C, Motawaj M, Grimont E, Auquier P, et al. (2015) Aetiologies, comorbidities and causes of death in a population of 133 patients with polyhandicaps cared for at specialist rehabilitation centres. Brain Inj 29: 837–842. doi:
- Rousseau MC, Mathieu S, Brisse C, Billette de Villemeur T (2013) Le parcours de santé de la personne en situation de polyhandicap. Annals of Physical and Rehabilitation Medicine 56: 271–272
- Poppes P, van der Putten AJ, Vlaskamp C (2010) Frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities. Res Dev Disabil 31: 1269–1275. doi:
- Bindels-de Heus KG, van Staa A, van Vliet I, Ewals FV, Hilberink SR (2013) Transferring young people with profound intellectual and multiple disabilities from pediatric to adult medical care: parents' experiences and recommendations. Intellect Dev Disabil 51: 176–189. doi:
- Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Jorissen T W, Okinow NA, Orr DP, et al. (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 14: 570–576.
- American Academy of P, American Academy of Family P, American College of P, Transitions Clinical Report Authoring G, Cooley WC, et al. (2011) Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128: 182–200. doi:
Source: PubMed