Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Oct 6;23(1):96.
doi: 10.1186/s12955-025-02434-3.

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

Karine Baumstarck  1   2 , Ilyes Hamouda  3   4 , Nicolas Iline  4 , Houria El Ouazzani  3   4 , Maryam Fouladvand  4 , Souad Loukkal  4 , Any Beltran Anzola  4 , Sibylle Del Duca  4 , Marie-Christine Rousseau  3   5 ; EVAL-PLH Group
Collaborators, Affiliations

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

Karine Baumstarck et al. Health Qual Life Outcomes. .

Abstract

Background: People 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.

Methods: Data 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.

Results: QoL 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 registration: Clinical trial number: NCT02400528 (registered 27/03/2015).

Supplementary Information: The online version contains supplementary material available at 10.1186/s12955-025-02434-3.

Keywords: Institutional caregiver; Parent; Polyhandicap; Profound intellectual and multiple disabilities; Quality of life.

PubMed Disclaimer

Conflict of interest statement

Declarations. Ethics approval and consent to participate: Regulatory monitoring was performed in accordance with French law that requires the approval of the French ethics committee (Comité de Protection des Personnes Sud Méditerranée V, 20/10/2014, reference number 2014-A00953-44). The research was performed in accordance with the Declaration of Helsinki. A written consent form was collected for each participant (from the legal representative for the persons with PIMD/polyhandicap). Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Quality of life assessed from the institutional caregivers (N = 335) and the parents (N = 144). PolyQoL scores from 0 (worse) and 100 (best) quality of life (means and standard deviations)
Fig. 2
Fig. 2
Distribution of agreement between institutional caregivers and parents scores (N = 76). Sample of 76 persons with 2 assessments Agreement = |caregiver – parent score| ≤0.5 greatest SD of scores, i.e. threshold for each domain in the above order: Health: 8 points, Social: 10.5 points, Global: 8.5 points
See this image and copyright information in PMC

References

    1. Rousseau M-C, Winance M, Baumstarck K. Polyhandicap, profound intellectual multiple disabilities: concept and definition of a highly specific public health issue. Rev Epidemiol Sante Publique. 2023;71:102184. - PubMed
    1. Baumstarck K, Hamouda I, Beltran A, Del Luca S, El Ouazzani H, Rousseau MC. Importance of health indicators: update for people with polyhandicap. J Epidemiol Popul Health. 2024;72(5):202547. - PubMed
    1. Apolone G, De Carli G, Brunetti M, Garattini S. Health-related quality of life (HR-QOL) and regulatory issues. An assessment of the European agency for the evaluation of medicinal products (EMEA) recommendations on the use of HR-QOL measures in drug approval. Pharmacoeconomics. 2001;19:187–95. - PubMed
    1. Chan E, Edwards T, Haywood K, Mikles S, Newton L. Companion guide to implementing patient reported outcomes assessment in clinical practice. Report, 15 pages. ISOQOL, International Society for Quality of Life Research; 2018. - PMC - PubMed
    1. Olsman E, Nieuwenhuijse AM, Willems DL. Witnessing quality of life of persons with profound intellectual and multiple disabilities. A practical-philosophical approach. Health Care Anal. 2021;29:144–53. - PubMed

LinkOut - more resources