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One year quality of life outcomes in critically ill children: a multicenter prospective cohort study
Joseph C Manning1,2, Jos M Latour3,4,5, Elizabeth Draper6
1School of Healthcare, University of Leicester, Leicester, UK. Joseph.manning@leicester.ac.uk.
Insights
Many children experience reduced quality of life after pediatric intensive care, with over half remaining below their baseline 12 months post-discharge. Persistent physical and school impairments highlight the need for tailored follow-up care.
Area of Science:
- Pediatric critical care medicine
- Health services research
- Quality of life research
Background:
- Survivors of pediatric intensive care (PICU) often face long-term health issues, but recovery patterns are not fully understood.
- Uncertainty exists regarding trajectories of health-related quality of life (HRQoL) and fatigue in children post-PICU.
Purpose of the Study:
- To investigate the HRQoL and fatigue recovery trajectory in children during the first year after PICU discharge.
- To identify baseline and PICU-related factors associated with poorer outcomes in pediatric critical care survivors.
Main Methods:
- A multicenter prospective cohort study (OCEANIC) involving 326 children across 10 English PICUs.
- Assessment of HRQoL and fatigue using PedsQL™ at multiple time points: baseline, PICU discharge, and 1, 3, 6, and 12 months post-discharge.
- Utilized Random Forest models with SHapley Additive exPlanations (SHAP) to identify key influencing factors.
Main Results:
- Mean HRQoL significantly decreased from baseline to PICU discharge, then gradually improved but remained below baseline for many children.
- At 12 months, 58.1% of respondents had lower HRQoL than their pre-PICU baseline; physical and school functioning showed persistent deficits.
- Fatigue largely normalized by 6 months, while cognitive function returned to baseline by 1 month.
Conclusions:
- A significant proportion of pediatric intensive care survivors experience persistent impairments in HRQoL 12 months post-discharge, particularly in physical and school functioning.
- Identifying subgroups with higher baseline HRQoL needs, lower discharge HRQoL, older age, or prolonged PICU stays is crucial for targeted multidisciplinary follow-up.
Background:
Survivors of pediatric intensive care often experience prolonged morbidity, but recovery trajectories and features associated with impairment in general PICU populations remain uncertain. We aimed to explore the trajectory of health-related quality of life (HRQoL) and fatigue in critically ill children over the first year following PICU discharge, and to identify baseline and PICU factors associated with worse outcomes.
Methods:
OCEANIC is a multicenter prospective cohort study across 10 English PICUs. Children aged 1 month-17 years with PICU stay ≥ 48 h were enrolled (2019-2022) and followed for 12-months (to 2023). HRQoL (PedsQL™ 4.0 Acute Versions) and fatigue (PedsQL™ Multidimensional Fatigue) were assessed at baseline (pre‑admission), PICU discharge, and 1, 3, 6 and 12 -months. We used Random Forest models with SHapley Additive exPlanations (SHAP) to identify features associated with below‑baseline HRQoL at each timepoint.
Results:
Of 326 children enrolled, 220 had ≥ 3 HRQoL assessments. Mean PedsQL fell from 73.3 (SD 20.99) at baseline to 54.3 (SD 23.52) at discharge, then rose to 62.9 (1-month, SD 21.73) and 67.1 (3-months, SD 20.38), stabilizing thereafter (70.4 (SD 21.34) at 6-months; 69.8 (SD 22.46) at 12-months; p < 0.001 across time). At discharge, 71.8% were below their baseline HRQoL. Among 12‑month respondents, 58.1% remained below their baseline. Physical and school functioning showed persistent impairment, with cognitive functioning returning to baseline by 1-month. Fatigue largely normalized by 6-months. Higher baseline HRQoL and older age were consistently influential features with worse HRQoL, with physiological/illness markers important features across timepoints.
Conclusion:
At 12-months, 58% of responding children remained below their pre-PICU baseline HRQoL, with persistent impairment most evident in physical and school functioning. Modelling identifies population-level subgroups of children characterized by higher baseline or lower discharge HRQoL, older age, and prolonged PICU exposure who may warrant closer multidisciplinary follow‑up after PICU discharge.
Trial Registration:
ISRCTN28072812 14/02/2020.
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