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.