Rationale: Discussion of patient expectations for recovery is a component of intensive care unit (ICU) follow-up clinics. However, few studies have formally evaluated recovery-related expectations of ICU survivors. Objectives: To estimate the prevalence of unmet expectations for recovery 6 months after hospital discharge among adult survivors of acute respiratory failure (ARF). Methods: This was a prospective, longitudinal, cohort study of survivors of ARF discharged to home from five U.S. medical centers. Expectations for functional recovery were assessed by asking which activities and instrumental activities of daily living (I/ADLs) survivors expected to perform independently at 6 months. Survivors' expectations for overall health status were assessed using a visual analogue scale ranging from 0 to 100. At 6-month follow-up, participants reported which I/ADLs they could perform independently and rated their overall health status using a 100-point visual analogue scale. We defined a participant's functional expectations as being met if they reported independently performing I/ADLs as expected at hospital discharge. Health expectations were considered to be met when self-rated health status at 6 months was no more than 8 points lower than expected at enrollment. Results: Among 180 enrollees, 169 (94%) were alive, and 160 of these (95%) participated in 6-month follow-up. Functional expectations were met for 71% of participating survivors, and overall health expectations were met for 50%. Expectations for functional independence were high, ranging from 87% (housekeeping) to 99% (using a telephone). General health expectations were variable (median, 85; interquartile range [IQR], 75-95). At 6-month follow-up, self-rated, overall health ranged from 2 to 100 (median, 80; IQR, 60-85). In exploratory analyses, participants with met versus unmet expectations differed most in formal education (functional expectations standardized difference = 0.88; health expectations standardized difference = 0.41). Conclusions: Expectations of survivors of ARF about independent functioning were high and generally met, but half had unmet general health expectations 6 months after discharge. It is difficult to predict whose health expectations will be unmet, but possessing less formal education may be a risk factor. Clinical trial registered with www.clinicaltrials.gov (NCT03797313).
Keywords: critical care outcomes; functional status; respiratory distress syndrome; survivorship.