Survivors of the acute respiratory distress syndrome have persistent functional disability one year after discharge from the intensive care unit. Most patients have extrapulmonary conditions, with muscle wasting and weakness being most prominent.
Survivors of ARDS continued to have functional impairment and compromised health-related quality of life 2 yr after discharge from the ICU. Health care use and costs after the initial hospitalization were driven by hospital readmissions and inpatient rehabilitation.
For patient and proxy ratings, the EQ-5D had the best combination of measurement properties, although it had a substantial ceiling effect for patient ratings. Proxy QOL ratings did not accurately reflect patients' ratings.
Informal caregivers experience negative health outcomes that persist almost 2 yrs after ARDS. New approaches, such as family-centered rehabilitation, caregiver education, improved respite, and home care, may benefit informal caregivers.
ARDS survivors report a high prevalence of depression symptoms and a lower prevalence of memory dysfunction 6 to 48 months after ICU discharge. Depression symptoms may hinder the return to work, or patients may report these symptoms because of inability to re-enter the workforce.
Agreement between estimates of pre-morbid HRQOL provided by ARDS survivors and their substitute decision makers was poor. Compared with survivors, proxies tended to provide lower estimates of pre-morbid HRQOL. Substitute decision making for incapacitated patients is an imperfect process during which family members may underestimate their loved ones' own perception of pre-morbid health status. Alternatively, survivors of critical illness may overestimate pre-morbid HRQOL.
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