title: Difference in reported pre-morbid health-related quality of life between ARDS survivors and their substitute decision makers.
abstract: BACKGROUND
  Substitute decision makers may consider the pre-morbid health status of their critically ill loved one when making treatment decisions on her/his behalf.
  
  
  OBJECTIVE
  To compare estimates of pre-morbid health-related quality of life (HRQOL) obtained from survivors of the acute respiratory distress syndrome (ARDS) with those of their substitute decision makers using the Short Form 36 (SF-36).
  
  
  METHODS
  Prospective cohort study.
  
  
  METHODS
  University-affiliated intensive care unit in Toronto, Canada.
  
  
  METHODS
  A sample of 46 ARDS survivors and their substitute decision makers drawn from a previously described cohort.
  
  
  METHODS
  We measured agreement and differences between responses on the SF-36 obtained from survivors (at 3 months after ICU discharge) and their substitute decision makers (at study entry).
  
  
  RESULTS
  Agreement was poor for all SF-36 components and differences reached significance in three domains. In multivariable analysis considering age; sex; Acute Physiology, Age, and Chronic Health Evaluation II score; and Lung Injury Score, only patient age was associated with the mean difference between estimates for the 'Mental Health' domain. On average, estimates of pre-morbid HRQOL obtained from substitute decision makers were lower than those obtained from survivors.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Critical Care Medicine, Sunnybrook and Women's Health Sciences Centre, 2075 Bayview Avenue, M4N 3M5, Toronto, Canada. damon.scales@utoronto.ca
authors.forename: Damon C
authors.initials: DC
authors.lastname: Scales
authors.forename: Catherine M
authors.initials: CM
authors.lastname: Tansey
authors.forename: Andrea
authors.initials: A
authors.lastname: Matte
authors.forename: Margaret S
authors.initials: MS
authors.lastname: Herridge
mesh_terms: D000328:Adult; D000368:Aged; D002170:Canada; D003657:Decision Making; D005190:Family / Q000523:psychology; D005260:Female; D006304:Health Status; D006801:Humans; D016014:Linear Models; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D019727:Proxy; D011788:Quality of Life; D012128:Respiratory Distress Syndrome / Q000628:therapy*; D017741:Survivors / Q000523:psychology