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Difference in reported pre-morbid health-related quality of life between ARDS survivors and their substitute decision makers

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Abstract

Context

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).

Design

Prospective cohort study.

Setting

University-affiliated intensive care unit in Toronto, Canada.

Patients

A sample of 46 ARDS survivors and their substitute decision makers drawn from a previously described cohort.

Interventions

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).

Measurements and 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.

Conclusion

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.

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Author information

Authors and Affiliations

  1. Department of Critical Care Medicine, Sunnybrook and Women’s Health Sciences Centre, 2075 Bayview Avenue, M4N 3M5, Toronto, Ontario, Canada

    Damon C. Scales

  2. Interdepartmental Division of Critical Care, University of Toronto, Toronto, Ontario, Canada

    Damon C. Scales, Andrea Matte & Margaret S. Herridge

  3. Institute of Medical Science, University of Toronto, Toronto, Ontario, Canada

    Catherine M. Tansey

  4. Department of Critical Care Medicine, University Health Network, Toronto, Ontario, Canada

    Andrea Matte & Margaret S. Herridge

Authors
  1. Damon C. Scales
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  2. Catherine M. Tansey
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  3. Andrea Matte
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  4. Margaret S. Herridge
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Corresponding author

Correspondence to Damon C. Scales.

Additional information

This article is discussed in the editorial available at: http://dx.doi.org/10.1007/s00134-006-334-z

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Scales, D.C., Tansey, C.M., Matte, A. et al. Difference in reported pre-morbid health-related quality of life between ARDS survivors and their substitute decision makers. Intensive Care Med 32, 1826–1831 (2006). https://doi.org/10.1007/s00134-006-0333-0

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  • DOI: https://doi.org/10.1007/s00134-006-0333-0

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