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Published in: Neurocritical Care 2/2017

01-04-2017 | Ethical Matters

Attitudes of Patients and Relatives Toward Disability and Treatment in Malignant MCA Infarction

Authors: Hermann Neugebauer, Matthias Schnabl, Dorothée Lulé, Peter U. Heuschmann, Eric Jüttler, for the IGNITE Study Group (Initiative of German NeuroIntensive Trial Engagement)

Published in: Neurocritical Care | Issue 2/2017

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Abstract

Background

Attitudes among patients and relatives toward the degree of acceptable disability and the importance of aphasia are critical in deciding on decompressive hemicraniectomy (DHC) in malignant middle cerebral artery infarction (MMI). However, most MMI patients are not able to communicate their will. Furthermore, attitudes of healthy individuals and relatives may not correspond to those of stroke patients.

Methods

This is a multicenter survey among 355 patients and 199 relatives during treatment for acute minor or moderate severe ischemic stroke in Germany. Questions address the acceptance of disability, importance of aphasia, and the preferred treatment in the hypothetical case of future MMI.

Results

mRS scores of 2 or better were considered acceptable by the majority of all respondents (72.9–88.1%). A mRS of 3, 4, and 5 was considered acceptable by 56.0, 24.5, and 6.8%, respectively. Except for a mRS of 1, relatives indicated each grade of disability significantly more often acceptable than patients. Differences regarding acceptable disability and treatment decision were depending on family status, housing situation, need of care, and disability. The presence of aphasia was considered important for treatment decision by both patients (46.5%) and relatives (39.2%). Older respondents more often refrained from DHC (p < 0.001).

Conclusion

In Germany, there is substantial heterogeneity in patients and relatives regarding acceptable disability, aphasia, and treatment decision in the hypothetical case of MMI. Relatives significantly overestimate the degree of disability that is acceptable to stroke patients. Further studies are warranted to determine whether differences in attitudes impact on the decision to undergo DHC.
Appendix
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Metadata
Title
Attitudes of Patients and Relatives Toward Disability and Treatment in Malignant MCA Infarction
Authors
Hermann Neugebauer
Matthias Schnabl
Dorothée Lulé
Peter U. Heuschmann
Eric Jüttler
for the IGNITE Study Group (Initiative of German NeuroIntensive Trial Engagement)
Publication date
01-04-2017
Publisher
Springer US
Published in
Neurocritical Care / Issue 2/2017
Print ISSN: 1541-6933
Electronic ISSN: 1556-0961
DOI
https://doi.org/10.1007/s12028-016-0362-7

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