title: Quality of life before intensive care using EQ-5D: patient versus proxy responses.
abstract: OBJECTIVE
  To compare patients' retrospectively reported baseline quality of life before intensive care hospitalization with population norms and proxy reports.
  
  
  METHODS
  Prospective cohort study.
  
  
  METHODS
  Thirteen ICUs at four teaching hospitals in Baltimore, MD.
  
  
  METHODS
  One hundred forty acute lung injury survivors and their designated proxies.
  
  
  METHODS
  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.
  
  
  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 was not clinically important. For the five individual EQ-5D domains, κ 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.
  
  
  CONCLUSIONS
  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 five EQ-5D domains, attenuating patients' more extreme ratings toward moderate scores. Caution is required when interpreting proxy retrospective reports of baseline health status for survivors of acute lung injury.
authors.affiliation: Outcomes After Critical Illness and Surgery Group, Division of Pulmonary and Critical Care Medicine, Johns Hopkins University, Baltimore, MD, USA.
authors.forename: Victor D
authors.initials: VD
authors.lastname: Dinglas
authors.forename: Jeneen M
authors.initials: JM
authors.lastname: Gifford
authors.forename: Nadia
authors.initials: N
authors.lastname: Husain
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Colantuoni
authors.forename: Dale M
authors.initials: DM
authors.lastname: Needham
mesh_terms: D055371:Acute Lung Injury / Q000534:rehabilitation*; D000328:Adult; D015142:Baltimore; D016022:Case-Control Studies; D005260:Female; D006801:Humans; D007362:Intensive Care Units; D008297:Male; D016555:Matched-Pair Analysis; D008875:Middle Aged; D011446:Prospective Studies; D019727:Proxy; D011788:Quality of Life; D012016:Reference Values; D015203:Reproducibility of Results; D057566:Self Report; D011795:Surveys and Questionnaires