Care trajectories in children with profound intellectual and multiple disabilities/polyhandicap: a cross-sectional study of the French National Cohort

Background: There are few studies that objectively describe the care trajectories of individuals with profound intellectual and multiple disabilities (PIMD/polyhandicap). This study aims to provide an initial description of these care trajectories from birth to 18 years. Methods: The cross-sectional study used data from the French cohort (EVALuation PoLyHandicap, EVAL-PLH) of individuals with PIMD/polyhandicap. Data were collected between 2020 and 2021. Inclusion criteria were: (i) age older than 3 years at the time of inclusion; (ii) a diagnosis of polyhandicap defined as an early brain lesion causing a combination of severe motor impairment, profound intellectual disability, and high dependency in daily life. To ensure data reliability, the analysis focused on individuals under 35 years of age. Four life periods were considered: 0-2 years, 3-5 years, 6-10 years, and 11-17 years. For each period, the primary care modality-defined as the care setting in which the individual spent the majority of time-was recorded (nursery, exclusive home care, day care facility, 24-h care facility). Care trajectories were analyzed using Sankey diagrams. Results: A total of 407 individuals were included in the analysis. During the 0-2-year period, a large proportion of the sample was cared for exclusively at home, but this proportion decreased with age. In contrast, the use of 24-h care facilities showed an increasing trend over time and became the predominant care modality during the 11-17-year period. Day care facilities never represented the dominant care modality in any life period. The time spent in the primary care modality ranged from 22 to 47 months across the four periods. Less than 5% of individuals experienced a care discontinuity event. Conclusion: This study provides initial empirical evidence describing the care trajectories of individuals with PIMD/polyhandicap from birth to 18 years. These findings offer a valuable basis for evaluating current service provision and identifying gaps in the organization of care. A better understanding of these trajectories may help inform policy decisions, improve the quality and accessibility of services, and support more appropriate allocation of resources for this population. Clinical trial registration: Clinical trial registration number NCT02400528 registered 27/03/2015.