Article

Neurological diseases are characterized by the complexity of care and by a
constant and changing disability. More and more frequently, their impact on the
clinical pathway remains unknown. Seven postgraduate rehabilitation students
(Master coordination du handicap, universite Pierre-et-Marie-Curie, Paris)
reconstructed the clinical pathway of 123 patients with various neurological
diseases: multiple sclerosis, Alzheimer disease, amyotrophic lateral sclerosis,
spinal trauma, Parkinson disease and brain tumors. There was a significant
correlation between disease duration and the number of specialists involved in
care, the number of prescribed drugs and the number of short-term
hospitalizations; there was no correlation with age. This result suggests that
with time an increasing number of complications related to the initial
neurological disease developed. Hospitalization in rehabilitation units was
highly correlated with the degree of disability and also with the help received
by the patients during the course of their disease. This result suggests that
these hospitalizations were a direct consequence of burn out among relatives.
General practitioners (GP) were highly involved only during the initial part of
the pathway, and their involvement rapidly declined thereafter, suggesting a
probable relation with the specificities and the complexity of care for
neurological diseases which induces a progressive transfer of responsibilities
from the GP to the hospital. Social care was always incomplete and occurred too
late during the course of the disease. The feeling by the patients that their
care pathway was chaotic was highly correlated with the quality of the
information given to the patient at the time of the announcement of their
disease. This study confirms that cares for neurological diseases is highly
specific and that expert centers and coordination networks are in a key position
to ensure an efficient care pathway.
CI - Copyright (c) 2013 Elsevier Masson SAS. All rights reserved.

Langue : FRANCAIS