Objective
To compare patient’s retrospectively reported baseline quality of life before intensive care hospitalization with population norms and proxy reports.
Design
Prospective cohort study.
Setting
13 intensive care units at 4 teaching hospitals in Baltimore, MD, USA.
Patients
140 acute lung injury survivors and their designated proxies.
Interventions
Around the time of hospital discharge, both patients and proxies were asked to retrospectively estimate patients' baseline quality of life before hospital admission using the EQ-5D quality of life instrument.
Measurements and Main Results
Mean patient-rated EQ-5D visual analog scale scores and utility scores were significantly lower than population norms, but were significantly higher than proxy ratings. However, the magnitude of difference in average utility scores between patients and either population norms or proxies were not clinically important. For the 5 individual EQ-5D domains, kappa statistics revealed slight to fair agreement between patients and proxies. Bland-Altman plots demonstrated that for both the visual analog scale and utility scores, proxies underestimated scores when patients reported high ratings and overestimated scores for low patient ratings.
Conclusion
Patients retrospectively reported worse baseline health status before acute lung injury than population norms and better status than proxy reports; however, the magnitude of these differences in health status may not be clinically important. Proxies had only slight to fair agreement with patients in all 5 EQ-5D domains, attenuating patients’ more extreme ratings towards moderate scores. Caution is required when interpreting proxy retrospective reports of baseline health status for survivors of acute lung injury.