One year quality of life outcomes in critically ill children: a multicenter prospective cohort study

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.