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A validated risk score to estimate mortality risk in patients with dementia and pneumonia: barriers to clinical impact

Published online by Cambridge University Press:  26 July 2010

Jenny T. van der Steen ,
Gwenda Albers ,
Els Licht-Strunk ,
Martien T. Muller  and
Miel W. Ribbe
Jenny T. van der Steen*
Affiliation:
VU University Medical Center, EMGO Institute for Health and Care Research, Department of Nursing Home Medicine, Amsterdam, The Netherlands VU University Medical Center, EMGO Institute for Health and Care Research, Department of Public and Occupational Health, Amsterdam, The Netherlands
Gwenda Albers
Affiliation:
VU University Medical Center, EMGO Institute for Health and Care Research, Department of Public and Occupational Health, Amsterdam, The Netherlands
Els Licht-Strunk
Affiliation:
VU University Medical Center, EMGO Institute for Health and Care Research, Department of General Practice, Amsterdam, The Netherlands
Martien T. Muller
Affiliation:
VU University Medical Center, Department of Nursing Home Medicine, Amsterdam, The Netherlands
Miel W. Ribbe
Affiliation:
VU University Medical Center, EMGO Institute for Health and Care Research, Department of Nursing Home Medicine, Amsterdam, The Netherlands
*
Correspondence should be addressed to: Jenny T. van der Steen, PhD, VU University Medical Center, EMGO Institute for Health and Care Research, Department of Nursing Home Medicine, and Department of Public and Occupational Health, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands. Phone: +31-20-4449694; Fax +31-20-4448387. Email j.vandersteen@vumc.nl.
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Abstract

Background: The clinical impact of risk score use in end-of-life settings is unknown, with reports limited to technical properties.

Methods: We conducted a mixed-methods study to evaluate clinical impact of a validated mortality risk score aimed at informing prognosis and supporting clinicians in decision-making in dementia patients with pneumonia. We performed a trial (n = 69) with physician-reported outcomes referring to the score's aims. Subsequently, physician focus group discussions were planned to better understand barriers to clinical impact, and we surveyed families (n = 50) and nurses practicing in nursing homes (n = 29). We finally consulted with experts and key persons for implementation.

Results: Most (71%) physicians who used the score considered it useful, but mainly for its learning effects. Families were never informed of numerical risk estimates. Two focus group discussions revealed a reluctance to use a numerical approach, and physicians found that outcomes conditional on antibiotic treatment were inadequate to support decision-making. Nurses varied in their perceived role in informing families. Most families (88%) wished to be informed, preferring a numerical (43%), verbalized (35%), or other approach (18%) or had no preference (5%). Revising the score, we added an ethical framework for decision-making to acknowledge its complexity, an explanatory note addressing barriers related to physicians’ attitudes, and a nurses’ form.

Conclusion: The combined quantitative and qualitative studies elicited: substantial barriers to a numerical approach to physicians’ end-of-life decision-making; crucial information for revisions and further score development; and a need for implementation strategies that focus on education.

Keywords

palliative careprognosisrisk scorelong-term careclinical impact analysis
Type
Research Article
Information
International Psychogeriatrics , Volume 23 , Issue 1 , February 2011 , pp. 31 - 43
Copyright
Copyright © International Psychogeriatric Association 2010

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