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| ID | Type | Description | Link |
|---|---|---|---|
| RCAPHM14_0082 | Other Identifier | APHM | |
| 2014-A00953-44 | Other Identifier | IDRCB ANSM |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients With Profound and Multiple Disabilities | Other |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| quality of life questionnaires | Behavioral |
|
| Measure | Description | Time Frame |
|---|---|---|
| Caregivers quality of life | Assessment of quality of life from questionnaires,WHOQOL-Bref, Brief-COPE - Brief-COPE | 36 months |
| Measure | Description | Time Frame |
|---|---|---|
| emotional distress and subjective burden of natural caregivers, | Assessment of quality of life from questionnaires,WHOQOL-Bref
| 36 months |
| burnout of institutional caregivers |
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Inclusion Criteria:
Exclusion Criteria:
Subject declaring benefit "psychotropic treatment which" significantly alter the reasoning, discernment or judgment.
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Assistance Publique Hôpitaux de Marseille | Recruiting | Marseille | 13354 | France |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 42191771 | Derived | Rousseau MC, Del-Duca S, Beltran A, Ouazzani HE, Hamouda I, de Villemeur TB, Auquier P; Eval-PLH Group; Baumstarck K. Young adults with PIMD Polyhandicap in pediatric settings a situation more complex than problematic. Sci Rep. 2026 May 26. doi: 10.1038/s41598-026-51457-3. Online ahead of print. | |
| 41053826 | Derived |
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Assessment of quality of life from questionnaires,WHOQOL-Bref
| 36 months |
| Baumstarck K, Hamouda I, Iline N, El Ouazzani H, Fouladvand M, Loukkal S, Beltran Anzola A, Del Duca S, Rousseau MC; EVAL-PLH Group. Quality of life among individuals with profound intellectual and multiple disabilities: crossed perspectives of institutional caregivers and parents. Health Qual Life Outcomes. 2025 Oct 6;23(1):96. doi: 10.1186/s12955-025-02434-3. |
| 39934966 | Derived | Baumstarck K, Del Duca S, El Ouazzani H, Hamouda I, Beltran Anzola A, Aim MA, Rousseau MC. Increased Life Expectancy of People With Profound Intellectual and Multiple Disabilities: What Does It Change for Parents? J Appl Res Intellect Disabil. 2025 Jan;38(1):e70018. doi: 10.1111/jar.70018. |
| 39494083 | Derived | Rousseau MC, Beltran A, Hamouda I, Aim MA, Felce A, Lind K, Khaldi N, El Ouazzani H, Auquier P, de Villemeur TB, Baumstarck K. Impact of caring for patients with polyhandicap on institutional health care workers' quality of life: a cross-sectional and longitudinal evaluation. Front Public Health. 2024 Oct 18;12:1427289. doi: 10.3389/fpubh.2024.1427289. eCollection 2024. |
| 38238747 | Derived | Baumstarck K, Hamouda I, Aim MA, Anzola AB, Khaldi-Cherif S, Felce A, Maincent K, Lind K, Auquier P, Billette de Villemeur T, Rousseau MC; and the EVAL-P. L. H. Group. Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study. BMC Health Serv Res. 2024 Jan 18;24(1):99. doi: 10.1186/s12913-024-10552-9. |
| 35869128 | Derived | Hamouda I, Rousseau MC, Beltran Anzola A, Aim MA, de Villemeur TB, Auquier P, Baumstarck K; EVAL-PLH group. The French EVAL-PLH cohort of persons with polyhandicap. Sci Rep. 2022 Jul 22;12(1):12512. doi: 10.1038/s41598-022-16596-3. |
| 32014871 | Derived | Rousseau MC, Baumstarck K, Valkov M, Felce A, Brisse C, Khaldi-Cherif S, Loundou A, Auquier P, Billette de Villemeur T; French Polyhandicap Group. Impact of severe polyhandicap cared for at home on French informal caregivers' burden: a cross-sectional study. BMJ Open. 2020 Feb 2;10(1):e032257. doi: 10.1136/bmjopen-2019-032257. |
| 29979745 | Derived | Rousseau MC, Billette de Villemeur T, Khaldi-Cherif S, Brisse C, Felce A, Baumstarck K, Auquier P; French Polyhandicap Group. Adequacy of care management of patients with polyhandicap in the French health system: A study of 782 patients. PLoS One. 2018 Jul 6;13(7):e0199986. doi: 10.1371/journal.pone.0199986. eCollection 2018. |
| ID | Term |
|---|---|
| D020335 | Paraparesis |
| D011782 | Quadriplegia |
| D010291 | Paresis |
| D001259 | Ataxia |
| D009468 | Neuromuscular Diseases |
| ID | Term |
|---|---|
| D009461 | Neurologic Manifestations |
| D009422 | Nervous System Diseases |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D010243 | Paralysis |
| D020820 | Dyskinesias |
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