Attitudes of Patients and Relatives Toward Disability and Treatment in Malignant MCA Infarction
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ETHICAL MATTERS
Attitudes of Patients and Relatives Toward Disability and Treatment in Malignant MCA Infarction Hermann Neugebauer1,6 • Matthias Schnabl2 • Dorothe´e Lule´1 • Peter U. Heuschmann3,4 • Eric Ju¨ttler1,5 • for the IGNITE Study Group (Initiative of German NeuroIntensive Trial Engagement)
Ó Springer Science+Business Media New York 2016
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.
Electronic supplementary material The online version of this article (doi:10.1007/s12028-016-0362-7) contains supplementary material, which is available to authorized users. & Hermann Neugebauer [email protected] 1
Department of Neurology, University of Ulm, Ulm, Germany
2
Department of Trauma Surgery and Orthopedics, Community Hospital Kliniken Nordoberpfalz AG Klinikum Weiden, Weiden in der Oberpfalz, Germany
3
Institute for Clinical Epidemiology and Biometry, University of Wu¨rzburg, Wu¨rzburg, Germany
4
Comprehensive Heart Failure Center, University of Wu¨rzburg, Wu¨rzburg, Germany
5
Department of Neurology, Ostalb-Klinikum Aalen, Aalen, Germany
6
RKU – University and Rehabilitation Hospitals Ulm, Oberer Eselsberg 45, 89081 Ulm, Germany
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. Keywords Decompressive hemicraniectomy Malignant middle cerebral artery infarction Outcome Disability
Introduction Malignant middle cerebral artery infarction (MMI) is a deva
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