Abstract
Background:
Surviving acute respiratory failure (ARF) in the ICU is often a life-changing event. Most survivors face endure impairments across several domains, termed as post-intensive care syndrome (PICS). There is limited investigation on how survivors and their caregivers perceive recovery from their own lived experiences. The objective of this study was to characterize which domains of recovery matter most to ARF survivors and their caregivers.
Methods:
A single-center, prospective observational study nested within 2 contiguous cohort studies: Addressing Post-Intensive Care Syndrome (APICS)-01 and APICS-COVID that enrolled ARF survivors who were admitted to ICU and discharged home. Survivors and caregivers were asked to prioritize following 9 domains of recovery using a custom-made survey: cognition, pain, physical function, pulmonary function, muscle/nerve function, mental health, fatigue, return to work or prior activities, and survival. These domains were chosen based on prior literature and modified based on input from a patient and family advisory council at the study site. The order of prioritization of domains of recovery was assessed at hospital discharge and at 3- and 6-month follow-up.
Results:
Forty eligible study subjects and 10 caregivers were recruited between 2019 and 2022. Mean age was 51.0 (SD 13.8) years, more than two thirds were male, and approximately one-third were non-white. Of the 9 domains surveyed, survival was consistently ranked the highest at each of the 3 time points. Cognitive recovery and physical function were ranked as the next 2 most important domains of recovery.
Conclusions:
ARF survivors who were discharged to home prioritized survival and then physical and cognitive recovery over 6 other domains. Understanding what matters most to survivors is a key step toward identifying priority areas for care in ICUs and rehabilitation after critical illness. Future studies should include survivors and caregivers from diverse backgrounds to obtain a comprehensive assessment of their perspective of recovery.
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Supplementary Material
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