An interventional study of quality of life questionnaires in Paraparesis, Tetraparesis and Hemiparesis, sponsored by Assistance Publique Hopitaux De Marseille. Status unknown at 1 site in France. Open to participants aged 3 Years and older. Per ClinicalTrials.gov, last updated 2015-03-27.
Sponsored by Assistance Publique Hopitaux De Marseille · Not applicable, Interventional, and Supportive care
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.
20 studies on the registry are indexed under Paraparesis; 5 are open to participants now.
This study's planned enrollment of 1,200 is above the median of 38 across 16 interventional studies indexed under Paraparesis.
Browse Paraparesis studies →Assistance Publique Hopitaux De Marseille is the lead sponsor of 700 studies on the registry; 144 are open to participants now.
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Exclusion Criteria:
Subject declaring benefit "psychotropic treatment which" significantly alter the reasoning, discernment or judgment.
Behavioral: quality of life questionnaires
Caregivers quality of life
Assessment of quality of life from questionnaires,WHOQOL-Bref, Brief-COPE \- Brief-COPE
Time frame: 36 months
emotional distress and subjective burden of natural caregivers,
Assessment of quality of life from questionnaires,WHOQOL-Bref * Brief-COPE * CRA
Time frame: 36 months
burnout of institutional caregivers
Assessment of quality of life from questionnaires,WHOQOL-Bref * Brief-COPE * MBI
Time frame: 36 months
This study is status unknown, as verified in Feb 2015. You cannot join it, but the record below documents what was studied.
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