Top

Intensive Care Medicine

Published in:

01-11-2006 | Original

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

Authors: Damon C. Scales, Catherine M. Tansey, Andrea Matte, Margaret S. Herridge

Published in: Intensive Care Medicine | Issue 11/2006

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.

Pickard AS, Knight SJ (2005) proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives. Med Care 43:493–499PubMedCrossRef

Yip JY, Wilber KH, Myrtle RC, Grazman DN (2001) comparison of older adult subject and proxy responses on the SF-36 health-related quality of life instrument. Aging Ment Health 5:136–142PubMedCrossRef

Rebollo P, Alvarez-Ude F, Valdes C, Estebanez C (2004) Different evaluations of the health related quality of life in dialysis patients. J Nephrol 17:833–840PubMed

Andresen EM, Vahle VJ, Lollar D (2001) Proxy reliability: health-related quality of life (HRQoL) measures for people with disability. Qual Life Res 10:609–619PubMedCrossRef

Pierre U, Wood-Dauphinee S, Korner-Bitensky N, Gayton D, Hanley J (1998) Proxy use of the Canadian SF-36 in rating health status of the disabled elderly. J Clin Epidemiol 51:983–990PubMedCrossRef

Rogers J, Ridley S, Chrispin P, Scotton H, Lloyd D (1997) Reliability of the next of kin's estimates of critically ill patients' quality of life. Anaesthesia 52:1137–1143PubMedCrossRef

Capuzzo M, Grasselli C, Carrer S, Gritti G, Alvisi R (2000) Quality of life before intensive care admission: agreement between patient and relative assessment. Intensive Care Med 26:1288–1295PubMedCrossRef

Hofhuis J, Hautvast JL, Schrijvers AJ, Bakker J (2003) Quality of life on admission to the intensive care: can we query the relatives? Intensive Care Med 29:974–979PubMed

Elliott D, Lazarus R, Leeder SR (2006) Proxy respondents reliably assessed the quality of life of elective cardiac surgery patients. J Clin Epidemiol 59:153–159PubMedCrossRef

10.

Graf J, Koch M, Dujardin R, Kersten A, Janssens U (2003) Health-related quality of life before, 1 month after, and 9 months after intensive care in medical cardiovascular and pulmonary patients. Crit Care Med 31:2163–2169PubMedCrossRef

11.

Graf J, Wagner J, Graf C, Koch KC, Janssens U (2005) Five-year survival, quality of life, and individual costs of 303 consecutive medical intensive care patients – a cost-utility analysis. Crit Care Med 33:547–555PubMedCrossRef

12.

Schelling G, Stoll C, Haller M, Briegel J, Manert W, Hummel T, Lenhart A, Heyduck M, Polasek J, Meier M, Preuss U, Bullinger M, Schuffel W, Peter K (1998) Health-related quality of life and posttraumatic stress disorder in survivors of the acute respiratory distress syndrome. Crit Care Med 26:651–659PubMedCrossRef

13.

Schelling G, Stoll C, Vogelmeier C, Hummel T, Behr J, Kapfhammer HP, Rothenhausler HB, Haller M, Durst K, Krauseneck T, Briegel J (2000) Pulmonary function and health-related quality of life in a sample of long-term survivors of the acute respiratory distress syndrome. Intensive Care Med 26:1304–1311PubMedCrossRef

14.

Welsh CH, Thompson K, Long-Krug S (1999) Evaluation of patient-perceived health status using the Medical Outcomes Survey Short-Form 36 in an intensive care unit population. Crit Care Med 27:1466–1471PubMedCrossRef

15.

Herridge MS, Cheung AM, Tansey CM, Matte-Martyn A, Diaz-Granados N, Al Saidi F, Cooper AB, Guest CB, Mazer CD, Mehta S, Stewart TE, Barr A, Cook D, Slutsky AS (2003) One-year outcomes in survivors of the acute respiratory distress syndrome. N Engl J Med 348:683–693PubMedCrossRef

16.

Heyland DK, Groll D, Caeser M. Survivors (2005) of Acute Respiratory distress syndrome: relationship between pulmonary dysfunction and long-term health-related quality of life. Crit Care Med 33:1549–1556PubMedCrossRef

17.

Orwelius L, Nordlund A, Edell-Gustafsson U, Simonsson E, Nordlund P, Kristenson M, Bendtsen P, Sjoberg F (2005) Role of preexisting disease in patients' perceptions of health-related quality of life after intensive care. Crit Care Med 33:1557–1564PubMedCrossRef

18.

Scales DC, Tansey CM, Matte-Martyn A, Herridge MS (2005) Difference in reported pre-morbid health-related quality of life (HRQOL) in ARDS survivors compared to their surrogate decision-maker (SDM). Proc Am Thor Soc 2 (abstract issue)

19.

McHorney CA, Ware JE Jr, Lu JF, Sherbourne CD (1994) The MOS 36-item Short-Form Health Survey (SF-36). III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care 32:40–66PubMedCrossRef

20.

Ware JE Jr, Snow KK, Kosinski M, Gandek B (1993) SF-36 Health Survey manual & interpretation guide. The Health Institute, New England Medical Center, Boston, MA

21.

Ware JE Jr, Kosinski M, Keller SD (1994) SF-36 physical and mental health summary scales: a user's manual. Health Assessment Lab, Boston, MA

22.

Knaus WA, Draper EA, Wagner DP, Zimmerman JE (1985) APACHE II: a severity of disease classification system. Crit Care Med 13:818–829PubMed

23.

Murray JF, Matthay MA, Luce JM, Flick MR (1988) An expanded definition of the adult respiratory distress syndrome. Am Rev Respir Dis 138:720–723PubMed

24.

Marshall JC, Cook DJ, Christou NV, Bernard GR, Sprung CL, Sibbald WJ (1995) Multiple organ dysfunction score: a reliable descriptor of a complex clinical outcome. Crit Care Med 23:1638–1652PubMedCrossRef

25.

Fleis JL (2004) Statistical methods for rates and proportions, 2nd edn. Wiley, New York

26.

Cohen J (1960) A coefficient of agreement for nominal scales. Educ Psychol Measurement 20:37–46

27.

Cohen J (1968) Weighted Kappa: nominal scale agreement with provision for scaled disagreement of partial credit. Psychol Bull 70:213–220CrossRef

28.

Walters SJ, Campbell MJ, Lall R (2001) Design and analysis of trials with quality of life as an outcome: a practical guide. J Biopharm Stat 11:155–176PubMedCrossRef

29.

Walters SJ (2004) Sample size and power estimation for studies with health related quality of life outcomes: a comparison of four methods using the SF-36. Health Qual Life Outcomes 2:26PubMedCrossRef

30.

Cicchetti DV, Allison T (1971) A new procedure for assessing reliability of scoring EEG sleep recordings. Am J EEG Technol 11:101–109

31.

Shrout PE, Fleis JL (1979) Intraclass correlations: uses in assessing rater reliability. Psychol Bull 86:420–428CrossRef

32.

Altman DG (1991) Practical statistics for medical research. Chapman and Hall, London

33.

Rubenfeld GD, Caldwell E, Peabody E, Weaver J, Martin DP, Neff M, Stern EJ, Hudson LD (2005) Incidence and outcomes of acute lung injury. N Engl J Med 353:1685–1693PubMedCrossRef

34.

Shalowitz DI, Garrett-Mayer E, Wendler D (2006) The accuracy of surrogate decision makers: a systematic review. Arch Intern Med 166:493–497PubMedCrossRef

35.

Weinfurt KP, Trucco SM, Willke RJ, Schulman KA (2002) Measuring agreement between patient and proxy responses to multidimensional health-related quality-of-life measures in clinical trials. An application of psychometric profile analysis. J Clin Epidemiol 55:608–618PubMedCrossRef

36.

Cohen S, Sprung C, Sjokvist P, Lippert A, Ricou B, Baras M, Hovilehto S, Maia P, Phelan D, Reinhart K, Werdan K, Bulow HH, Woodcock T (2005) Communication of end-of-life decisions in European intensive care units. Intensive Care Med 31:1215–1221PubMedCrossRef

37.

Andrews P, Azoulay E, Antonelli M, Brochard L, Brun-Buisson C, Dobb G, Fagon JY, Gerlach H, Groeneveld J, Mancebo J, Metnitz P, Nava S, Pugin J, Pinsky M, Radermacher P, Richard C, Tasker R (2006) Year in review in intensive care medicine, 2005. II. Infection and sepsis, ventilator-associated pneumonia, ethics, haematology and haemostasis, ICU organisation and scoring, brain injury. Intensive Care Med 32:380–390PubMedCrossRef

38.

Arnold RM, Kellum J (2003) Moral justifications for surrogate decision making in the intensive care unit: implications and limitations. Crit Care Med 31:S347–S353PubMedCrossRef

39.

Azoulay E, Pochard F, Chevret S, Adrie C, Bollaert PE, Brun F, Dreyfuss D, Garrouste-Org Goldgran-Toledano D, Jourdain M, Wolff M, Le Gall JR, Schlemmer B (2003) Opinions about surrogate designation: a population survey in France. Crit Care Med 31:1711–1714PubMedCrossRef

40.

Booth MG, Doherty P, Fairgrieve R, Kinsella J (2004) Relatives' knowledge of decision making in intensive care. J Med Ethics 30:459–461PubMedCrossRef

41.

Hopman WM, Towheed T, Anastassiades T, Tenenhouse A, Poliquin S, Berger C, Joseph L, Brown JP, Murray TM, Adachi JD, Hanley DA, Papadimitropoulos E (2000) Canadian normative data for the SF-36 Health Survey. Canadian Multicentre Osteoporosis Study Research Group. CMAJ 163:265–271PubMed

Title: Difference in reported pre-morbid health-related quality of life between ARDS survivors and their substitute decision makers
Authors: Damon C. Scales
Catherine M. Tansey
Andrea Matte
Margaret S. Herridge
Publication date: 01-11-2006
Publisher: Springer-Verlag
Published in: Intensive Care Medicine / Issue 11/2006
Print ISSN: 0342-4642
Electronic ISSN: 1432-1238
DOI: https://doi.org/10.1007/s00134-006-0333-0

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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

Abstract

Context

Objective

Design

Setting

Patients

Interventions

Measurements and results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Context

Objective

Design

Setting

Patients

Interventions

Measurements and results

Conclusion

Please log in to get access to this content

Other articles of this Issue 11/2006

Monitoring dead space during recruitment and PEEP titration in an experimental model

Changes in the Dutch law on medical research

Correlation of urinalysis and dipstick results with catheter-associated urinary tract infections in surgical ICU patients

Dying at home: cultural and religious preferences

Evaluation of the Binax NOW Streptococcus pneumoniae urinary antigen assay in intensive care patients hospitalized for pneumonia

Abdominal compartment syndrome: it's time to pay attention!