Evidence map›Paper›PMID 39934966›Full record

Trial reportJournal of applied research in intellectual disabilities : JARID2025

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

Karine Baumstarck, Sibylle Del Duca, Houria El Ouazzani, Ilyes Hamouda, Any Beltran Anzola, Marie-Anastasie Aim, Marie-Christine Rousseau

Registry-linked trialAbstract readClinical Trial
PubMed Full text at PMC Publisher
In one paragraph

Trial report in Journal of applied research in intellectual disabilities : JARID, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02400528 (Prospective Cohort Follow-up of French Patients With Profound and Multiple Disabilities), which is not on this map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT02400528 naunknown statusnot on this map

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

TypeinterventionalSponsorAssistance Publique Hopitaux De MarseilleRan2015 to 2019Enrolled1,200ConditionsParaparesis, Tetraparesis, Hemiparesis, AtaxiaArmsquality of life questionnaires
3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Karine BaumstarckEA 3279, CEReSS-Research Centre on Health Services and Quality of Life, Aix Marseille University, Marseille, France.
Sibylle Del DucaEpidemiology and Health Economy Department, Aix Marseille University, Marseille, France.
Houria El OuazzaniEA 3279, CEReSS-Research Centre on Health Services and Quality of Life, Aix Marseille University, Marseille, France.ORCID https://orcid.org/0000-0003-1021-7134
Ilyes HamoudaEA 3279, CEReSS-Research Centre on Health Services and Quality of Life, Aix Marseille University, Marseille, France.
Any Beltran AnzolaEpidemiology and Health Economy Department, Aix Marseille University, Marseille, France.
Marie-Anastasie AimLaboratoire CRESCO, Institut National Universitaire JF Champollion, Rodez, France.
Marie-Christine RousseauEA 3279, CEReSS-Research Centre on Health Services and Quality of Life, Aix Marseille University, Marseille, France.

Funding

Direction Générale de l'offre de SoinsInstitut National de la Santé et de la Recherche Médicale
6 · The paper itself

Abstract

backgroundAdvancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger parents.

methodThe participants were parents of people included in the French EVAL-PLH cohort. Psychological status, quality of life and coping were compared between (i) parents of the youngest persons (< 20 years) versus parents of the oldest persons (≥ 35 years); (ii) youngest (< 45 years) versus oldest parents (≥ 55 years).

resultsCompared with the youngest parents, the oldest parents did not differ in anxiety-mood disorders, quality of life or coping strategies used.

conclusionWe did not confirm that ageing generates psychological changes for parents. Future qualitative studies should deeply examine this underexplored issue.

trial registrationClinical trial number: NCT02400528.

Indexed as

Adaptation, PsychologicalAgingIntellectual DisabilityLife ExpectancyParentsPersons with DisabilitiesQuality of LifeAdultAgedAge FactorsFemaleFranceHumansMaleMiddle AgedYoung Adultageinglife experiencepolyhandicapprofound intellectual and multiple disabilities

Identifiers

PMID39934966
PMCPMC11814347

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.