Holistic, patient and caregiver-centred recovery outcomes in acute respiratory distress syndrome: A narrative review

Abstract

Acute respiratory distress syndrome (ARDS) causes substantial acute mortality and chronic morbidity among intensive care unit (ICU) survivors. This morbidity manifests as persistent deficits in physical function, cognition, and mental health, alongside impaired social and occupational participation. This study synthesizes epidemiological estimates, mechanistic insights into persistent inflammation, immunosuppression, and catabolism, and methodological critiques of short-term trial endpoints (e.g., ventilator-free days). Additionally, it evaluates implementation strategies to establish a pragmatic, patient-centred recovery framework. We evaluated current evidence and implementation barriers by integrating a narrative synthesis of the clinical literature, consensus guidance on core outcome sets, and post-ICU service data. Our synthesis highlights that survivors frequently develop ICU-acquired weakness and ventilator-associated diaphragmatic dysfunction, which underlie prolonged functional impairment. Furthermore, high symptom burdens (e.g., fatigue, dyspnoea, and pain), cognitive deficits, and psychiatric disorders commonly persist 3–12 months after hospital discharge. Current outcome measurement practices are constrained by an overreliance on short-term composite endpoints, inconsistent selection of assessment instruments, and high attrition during longitudinal follow-up. Emerging opportunities include adopting parsimonious core outcome sets, utilizing validated patient-reported and performance-based measures, implementing biological stratification via candidate biomarker panels, and integrating low-burden wearable monitoring to enhance longitudinal data density. A harmonized, patient-centred outcome framework that integrates validated clinical instruments with biological and digital phenotyping, while explicitly addressing implementation and equity barriers, will improve trial relevance and optimize post-ICU care for ARDS survivors.

Keywords

• Acute respiratory distress syndrome
• post-intensive care syndrome
• patient- reported outcomes
• core outcome set
• implementation science.

Ethical Statement

Ethical approval is not required as it is a narrative review

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