M-C Rousseau1, K Baumstarck2, P Auquier2, T Billette de Villemeur3. 1. Fédération des Hôpitaux de Polyhandicap et Multihandicap, Hôpital San Salvadour, Assistance publique-Hôpitaux de Paris, Hyères, France; EA 3279 CEReSS, Santé publique et qualité de vie, Aix-Marseille Université, 13005 Marseille, France. Electronic address: marie-christine.rousseau@aphp.fr. 2. EA 3279 CEReSS, Santé publique et qualité de vie, Aix-Marseille Université, 13005 Marseille, France. 3. Fédération des Hôpitaux de Polyhandicap et Multihandicap, Hôpital San Salvadour, Assistance publique-Hôpitaux de Paris, Hyères, France; Sorbonne Université, UPMC, GRC ConCer-LD, AP-HP, Hôpital Trousseau, Service de Neuropédiatrie, Pathologie du développement, Paris, France; Centre de référence des déficits intellectuels de causes rares, Inserm U 1141, 75000 Paris, France.
Abstract
INTRODUCTION: Polyhandicap is defined as the combination of severe mental impairment and severe motor deficit resulting in reduced mobility and an extreme reduction in autonomy. Over the last 20years, care management for these patients has become more structured, however, their care pathway is not always optimal. OBJECTIVE: To describe/compare the health characteristics, treatment and history of the care pathways of subjects who received care before and after 1990. METHOD: Multicentre cross-sectional study, population studied: patients with polyhandicap: (i) causal brain damage<3years, (ii) severe mental impairment, (iii) motor disability, (iv) reduced mobility, (v) extreme restriction of autonomy. DATA COLLECTED: clinical and medical, care procedures, treatments, history of care pathways. RESULTS: Patients are divided into 2 groups: 545 patients who received care after 1990 and 330 before 1990. Older patients present more recurrent urinary infections, slow transit, behavioural disorders and pain, and are prescribed a greater number of drugs. For those who received care before 1990, the age of admission to an establishment is lower, with one-third receiving a consultation dedicated to the transition from paediatric to adult teams. DISCUSSION/ CONCLUSION: The care sector for patients with polyhandicap makes it possible to meet their needs throughout their lives, however, there is still progress to be made in terms of formalisation and of coordinating the care pathway in order to facilitate the transition from paediatric to adult services/establishments.
INTRODUCTION: Polyhandicap is defined as the combination of severe mental impairment and severe motor deficit resulting in reduced mobility and an extreme reduction in autonomy. Over the last 20years, care management for these patients has become more structured, however, their care pathway is not always optimal. OBJECTIVE: To describe/compare the health characteristics, treatment and history of the care pathways of subjects who received care before and after 1990. METHOD: Multicentre cross-sectional study, population studied: patients with polyhandicap: (i) causal brain damage<3years, (ii) severe mental impairment, (iii) motor disability, (iv) reduced mobility, (v) extreme restriction of autonomy. DATA COLLECTED: clinical and medical, care procedures, treatments, history of care pathways. RESULTS:Patients are divided into 2 groups: 545 patients who received care after 1990 and 330 before 1990. Older patients present more recurrent urinary infections, slow transit, behavioural disorders and pain, and are prescribed a greater number of drugs. For those who received care before 1990, the age of admission to an establishment is lower, with one-third receiving a consultation dedicated to the transition from paediatric to adult teams. DISCUSSION/ CONCLUSION: The care sector for patients with polyhandicap makes it possible to meet their needs throughout their lives, however, there is still progress to be made in terms of formalisation and of coordinating the care pathway in order to facilitate the transition from paediatric to adult services/establishments.