Prospective Cohort Follow-up of French Patients With Profound and Multiple Disabilities: Healthcare Pathways and Quality of Life Among Patients and Their Families

Conditions

Ataxia, Extrapyramidal Motor Disorders, Hemiparesis, Neuromuscular Disorders, Paraparesis, Tetraparesis

Brief summary

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.

Karine Baumstarck, Souad Loukkal, Houria El Ouazzani, Sibylle Del Duca, Any Beltran et al. (7 authors)

Frontiers in Public Health2026-07-03

10.3389/fpubh.2026.1873749

Young adults with PIMD Polyhandicap in pediatric settings a situation more complex than problematic

Marie-Christine Rousseau, Sibylle Del-Duca, Any Beltran, Houria El Ouazzani, Ilyes Hamouda et al. (25 authors)

Scientific Reports2026-05-26

10.1038/s41598-026-51457-3

Quality of life among individuals with profound intellectual and multiple disabilities: crossed perspectives of institutional caregivers and parents

Karine Baumstarck, Ilyes Hamouda, Nicolas Iline, H. El Ouazzani, Maryam Fouladvand et al. (27 authors)

Health and Quality of Life Outcomes2025-10-06

10.1186/s12955-025-02434-3

Increased Life Expectancy of People With Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?

Karine Baumstarck, Stefano Del Duca, H. El Ouazzani, Ilyes Hamouda, Any Beltran Anzola et al. (7 authors)

Journal of Applied Research in Intellectual Disabilities2025-01-01

10.1111/jar.70018

Impact of caring for patients with polyhandicap on institutional health care workers’ quality of life: a cross-sectional and longitudinal evaluation

Marie‐Christine Rousseau, Any Beltran, Ilyes Hamouda, Marie‐Anastasie Aim, A Felce et al. (11 authors)

Frontiers in Public Health2024-10-183 citations

10.3389/fpubh.2024.1427289

Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study

Karine Baumstarck, Ilyes Hamouda, Marie‐Anastasie Aim, Any Beltran Anzola, Sherezad Khaldi-Cherif et al. (22 authors)

BMC Health Services Research2024-01-185 citations

10.1186/s12913-024-10552-9

Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

Marie‐Christine Rousseau, Karine Baumstarck, Maria Valkov, A Felce, Catherine Brisse et al. (9 authors)

BMJ Open2020-01-0115 citations

10.1136/bmjopen-2019-032257

Adequacy of care management of patients with polyhandicap in the French health system: A study of 782 patients

Marie‐Christine Rousseau, Thierry Billette de Villemeur, Sherezad Khaldi-Cherif, Catherine Brisse, A Felce et al. (8 authors)

PLoS ONE2018-07-0621 citations

10.1371/journal.pone.0199986

Interventions

BEHAVIORALquality of life questionnaires

Study design

Allocation

NON_RANDOMIZED

Intervention model

SINGLE_GROUP

Primary purpose

SUPPORTIVE_CARE

Masking

NONE

Eligibility

Sex/Gender

ALL

Age

3 Years to No maximum

Healthy volunteers

No

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.

Exclusion criteria

Subject declaring benefit psychotropic treatment which significantly alter the reasoning, discernment or judgment.

Design outcomes

Primary

Measure	Time frame	Description
Caregivers quality of life	36 months	Assessment of quality of life from questionnaires,WHOQOL-Bref, Brief-COPE \- Brief-COPE

Secondary

Measure	Time frame	Description
emotional distress and subjective burden of natural caregivers,	36 months	Assessment of quality of life from questionnaires,WHOQOL-Bref * Brief-COPE * CRA
burnout of institutional caregivers	36 months	Assessment of quality of life from questionnaires,WHOQOL-Bref * Brief-COPE * MBI

Countries

France

Outcome results

None listed