Trial reportHealth and quality of life outcomes2025
Quality of life among individuals with profound intellectual and multiple disabilities: crossed perspectives of institutional caregivers and parents.
Trial report in Health and quality of life outcomes, 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. Cited by 1 paper.
What it found
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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.
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.
Prospective Cohort Follow-up of French Patients With Profound and Multiple Disabilities: Healthcare Pathways and Quality of Life Among Patients and Their Families
Who cites it
1 citing paper in PubMed.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPeople with profound intellectual and multiple disabilities (PIMD) experience severe limitations in autonomy and communication due to early brain injury. Assessing their quality of life (QoL) is challenging but essential for optimizing care and outcomes. Proxy assessments, typically by parents or institutional caregivers, are commonly used, but the degree of agreement between these perspectives remains unclear. This study aimed to compare QoL assessments from both institutional caregivers and parents, and to identify associated factors.
methodsData were drawn from the French EVAL-PLH cohort, including individuals with PIMD/polyhandicap cared for in medical and rehabilitation services (MRS) or residential facilities (RF). QoL was measured using the PolyQoL questionnaire, completed by either institutional caregivers or parents. The study analyzed three population sets: those assessed by caregivers, by parents, or by both. Descriptive statistics, univariate analyses, and linear regressions (adjusted for age, care structure, and severity) were performed to identify factors linked to QoL scores.
resultsQoL data were available for 335 individuals (caregivers), 144 (parents), and 76 (both). Both respondent sets rated health QoL higher than social QoL. Institutional caregivers generally provided lower global (58 ± 16 vs. 63 ± 15) and social (46 ± 21 vs. 55 ± 19) QoL scores compared to parents. Lower caregiver-rated QoL was associated with older age of the person with PIMD, greater severity, and care in MRS, while parent ratings were less influenced by these factors. These findings were consistent in the set with both assessments. DISCUSSION: The study highlights discrepancies between caregiver and parent perspectives, with caregivers focusing more on clinical severity and parents on social aspects. Both viewpoints are complementary and necessary for comprehensive QoL assessment. Further qualitative research is recommended to deepen understanding of these differences and improve care strategies.
trial registrationClinical trial number: NCT02400528 (registered 27/03/2015).
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