Health Expectations and Quality of Life After Acute Respiratory Failure: A Multicenter Prospective Cohort Study

Abstract

Background: Patients often have high expectations for recovery after critical illness, but the impact of these expectations on subsequent quality of life (QoL) after serious illnesses has not been evaluated empirically.

Research question: Among adult survivors of acute respiratory failure (ARF), are met vs unmet expectations for health associated with self-reported QoL 6 months after discharge?

Study design and methods: This was a prospective longitudinal cohort study enrolling consecutive adult patients with ARF managed in ICUs at five academic medical centers. At hospital discharge, we evaluated participants' expected health 6 months in the future via a visual analog scale (VAS; range, 0-100), with higher scores representing better expected health. At 6-month follow-up, perceived health was assessed using the EQ-5D VAS, and QoL was assessed using the World Health Organization Quality of Life Brief Version (WHOQOL-BREF) instrument. Participants' health expectations were categorized as having been met when perceived health at 6 months was no more than eight points lower than their expectation at study enrollment. The primary analysis compared WHOQOL-BREF domain scores (range, 0-100) at 6 months after discharge in patients with met vs unmet health expectations using the nonparametric Mann-Whitney U test. Secondary analysis modeled WHOQOL-BREF domain scores using multivariate regression, and sensitivity analyses assessed QoL using EQ-5D-5L index values.

Results: In the primary analysis, QoL was significantly better among participants with met vs unmet health expectations across all domains of the WHOQOL-BREF: physical health (estimated difference in scores: median, 19 [interquartile range (IQR), 12-15]; P < .001), psychological health (median, 12 [IQR, 6-18]; P < .001), social relationships (median, 6 [IQR, 0-13]; P = .02), and environmental health (median, 12 [IQR, 6-13]; P < .001). In multivariate regression, the difference between expected and perceived health remained associated significantly with the physical health domain score.

Interpretation: Fulfillment of health expectations is associated with better QoL after ARF, suggesting a mechanism underpinning successful ICU recovery programs that incorporate normalization and expectation management.

Keywords: critical care outcomes; functional status; quality of life; respiratory distress syndrome; survivorship.

Graphical abstract

Figure 1

Scatterplot showing expected vs perceived health 6 mo after acute respiratory failure. At enrollment near the time of hospital discharge, participants were asked to indicate how good or bad they expected their health to be after 6 mo using a visual analog scale (VAS) ranging from 0 to 100 (with higher score being better health). At the 6-mo follow-up, participants were asked about their perceived health using the EQ-5D VAS, that also ranges from 0 to 100. The unshaded area represents the minimal clinical important difference (MCID) for the VAS of 8 units. Participants in the unshaded area were classified as having their health expectations met. The blue region contains participants whose perceived health was worse than expected by more than the MCID, whereas the pink region contains participants whose perceived health was better than expected by more than the MCID. Points have been jittered ± 1 unit in the horizontal or vertical directions for clarity. Shaded areas have been shrunk by 1 unit to ensure that no point extends into a shaded region as a result of jittering.

Figure 2

Graphs showing the unadjusted association between participants’ health expectation gap (HEG), and World Health Organization Quality of Life Brief Version (WHOQOL-BREF) domain scores at the 6-mo follow-up. The HEG is defined as participants’ perceived health at 6 mo as measured using the EQ-5D visual analog scale (0-100 scale), minus their expected health (0-100 scale) at hospital discharge. When these two scores are identical, the HEG is 0. When expectations are exceeded, the HEG is positive. The WHOQOL-BREF comprises four domains, and each domain score is transformed to a 0 to 100 scale, with higher scores indicating better quality of life. Shaded areas depict 95% CIs. Spearman rank correlation coefficient is reported for each domain. Locally estimated scatterplot smoothing (LOESS) smoothers with α = .8 are displayed.

Figure 3

Graph showing the estimated World Health Organization Quality of Life Brief Version (WHOQOL-BREF) physical health domain scores across a range of health expectation gap (HEG) values for a standardized patient. The HEG, shown on the x-axis across a range of values commonly observed in this study, is defined as participants’ perceived health at 6 mo as measured using the EQ-5D visual analog scale (0-100 scale), minus their expected health (0-100 scale) at hospital discharge. The y-axis shows predicted WHOQOL-BREF score for the physical health domain. Predicted WHOQOL-BREF physical health domain scores (blue line) are for a prototypical patient in this cohort of survivors of acute respiratory failure (male patient who can perform all activities of daily living and instrumental activities of daily living at the 6-mo follow-up, with median values for age, resilience, and perceived social support scores), with an EQ-5D visual analog scale score for perceived health of 65 at follow-up. Estimates were obtained using the adjusted multivariate models incorporating cubic regression splines to model the nonlinear relationship between the HEG and the physical health domain scores of the WHOQOL-BREF instrument. Shaded areas indicate 95% CIs.