Informations générales (source: ClinicalTrials.gov)
Prospective Cohort Follow-up of French Patients With Profound and Multiple Disabilities: Healthcare Pathways and Quality of Life Among Patients and Their Families (Eval-PLH)
Interventional
N/A
Assistance Publique Hopitaux De Marseille (Voir sur ClinicalTrials)
février 2015
février 2019
29 juin 2024
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.
Etablissements
| Les établissements hors Île-de-France dont les données sont issues de ClinicalTrials.gov Origine et niveau de fiabilité des données | |||||
|---|---|---|---|---|---|
| Assistance Publique Hôpitaux de Marseille - 13354 - Marseille - France | Urielle DESALBRES, Director | Contact (sur clinicalTrials) | |||
Critères
Tous
Inclusion Criteria:
- age > 3 years old,
- patient with health insurance,
- causal brain injury before the age of 3,
- Intellectual Quotient < 40 or not assessable,
- motor disability: paraparesis, tetraparesis, hemiparesis, ataxia, neuromuscular
disorders, or extrapyramidal motor disorders,
- score at the Gross Motor Function Classification System > 3,
- score at the Functional Independence Measure < 55.
- age > 3 years old,
- patient with health insurance,
- causal brain injury before the age of 3,
- Intellectual Quotient < 40 or not assessable,
- motor disability: paraparesis, tetraparesis, hemiparesis, ataxia, neuromuscular
disorders, or extrapyramidal motor disorders,
- score at the Gross Motor Function Classification System > 3,
- score at the Functional Independence Measure < 55.
Subject declaring benefit "psychotropic treatment which" significantly alter the
reasoning, discernment or judgment.