Difference in reported pre-morbid health-related quality of life between ARDS survivors and their substitute decision makers.
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.
Scales
Damon C
DC
Department of Critical Care Medicine, Sunnybrook and Women's Health Sciences Centre, 2075 Bayview Avenue, M4N 3M5, Toronto, Canada. damon.scales@utoronto.ca
Tansey
Catherine M
CM
Matte
Andrea
A
Herridge
Margaret S
MS
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