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

OCEANIC Study Investigators; Jos M Latour

doi:10.1186/s13054-026-06084-9

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

OCEANIC Study Investigators
, Jos M Latour

University of Leicester
Nottingham University Hospitals NHS Trust
Department of Nursing, Zhongshan Hospital, Fudan University, Shanghai, China.
Curtin University
University of Nottingham
University Hospitals Bristol and Weston NHS Foundation Trust
University of Pennsylvania
The Wesley Research Institute
University Hospital Coventry and Warwickshire NHS Foundation Trust

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Abstract

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.

Original language	English
Journal	Critical Care
Early online date	16 May 2026
DOIs	https://doi.org/10.1186/s13054-026-06084-9
Publication status	Published - 16 May 2026

Keywords

Pediatric Intensive Care
long-term outcomes
health-related quality of life
recovery trajectories
PedsQL
Machine learning

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@article{a731e4da05e64138b46709a6492f1191,

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

abstract = "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{\texttrademark} 4.0 Acute Versions) and fatigue (PedsQL{\texttrademark} 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.",

keywords = "Pediatric Intensive Care, long-term outcomes, health-related quality of life, recovery trajectories, PedsQL, Machine learning",

author = "\{OCEANIC Study Investigators\} and Manning, \{Joseph C\} and Latour, \{Jos M\} and Elizabeth Draper and Philip Quinlan and Popejoy, \{Emma M\} and Grazziela Figueredo and Shreya Iyer and Thomas Trimble and Julie Menzies and Curley, \{Martha A Q\} and Jane Coad",

note = "{\textcopyright} 2026. The Author(s).",

year = "2026",

month = may,

day = "16",

doi = "10.1186/s13054-026-06084-9",

language = "English",

journal = "Critical Care",

issn = "1364-8535",

publisher = "BioMed Central Ltd.",

}

TY - JOUR

T1 - One year quality of life outcomes in critically ill children

T2 - a multicenter prospective cohort study

AU - OCEANIC Study Investigators

AU - Manning, Joseph C

AU - Latour, Jos M

AU - Draper, Elizabeth

AU - Quinlan, Philip

AU - Popejoy, Emma M

AU - Figueredo, Grazziela

AU - Iyer, Shreya

AU - Trimble, Thomas

AU - Menzies, Julie

AU - Curley, Martha A Q

AU - Coad, Jane

PY - 2026/5/16

Y1 - 2026/5/16

N2 - 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.

AB - 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.

KW - Pediatric Intensive Care

KW - long-term outcomes

KW - health-related quality of life

KW - recovery trajectories

KW - PedsQL

KW - Machine learning

UR - https://pearl.plymouth.ac.uk/nm-research/924/

U2 - 10.1186/s13054-026-06084-9

DO - 10.1186/s13054-026-06084-9

M3 - Article

C2 - 42143354

SN - 1364-8535

JO - Critical Care

JF - Critical Care

ER -

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

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