Hemiparesis Clinical Trial
Official title:
Prospective Cohort Follow-up of French Patients With Profound and Multiple Disabilities: Healthcare Pathways and Quality of Life Among Patients and Their Families
The studies conducted so far concerning the medical and paramedical cares provided to
patients with profound and multiple disabilities (PMD) often show important limitations:
samples are too small or very heterogeneous, generally constituted of children only; studies
are mainly cross-sectional and retrospective, focusing on very specific issues instead of
assessing health and quality of life from a more global perspective… So far, the
investigators found no published data from a prospective cohort study involving a
representative sample of patients with PMD. The present project aims to set up such a cohort
so as to describe for the first time the natural history of French patients with PMD as well
as the cares they receive at home or within the different dedicated structures in France.
This cohort will also make it possible to identify the factors responsible for differences
in the cares patients are provided, the consequences of these differences on their health
and their quality of life (and those of their relatives) as well as the evolutions of these
data over time. It will then allow for assessing the effectiveness of the French healthcare
system to care for patients with PMD as well as building a frame of reference regarding the
best cares to provide to these patients.
The primary goal of this study is to identify the determinants of health among patients with
PMD.
n/a
Allocation: Non-Randomized, Intervention Model: Single Group Assignment, Masking: Open Label, Primary Purpose: Supportive Care
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