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

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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.

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Funding

There is no external funding. The study is exclusively driven by internal means of the Center for Stroke Research Berlin (CSB) and the Institute of Clinical Epidemiology and Biometry, University of Würzburg.

Author Contributions

H.N. analyzed and interpreted the data and drafted the manuscript. M.S. helped in clinical data collection and critical revision of the manuscript for important intellectual content. D.L. contributed to interpretation of data and critical revision of the manuscript for important intellectual content. P.U.H. analyzed and interpreted data and critically revised the manuscript for important intellectual content. E.J. contributed to study concept, design, supervision, and critical revision of the manuscript for important intellectual content.

Author information

Authors and Affiliations

  1. Department of Neurology, University of Ulm, Ulm, Germany

    Hermann Neugebauer, Dorothée Lulé & Eric Jüttler

  2. Department of Trauma Surgery and Orthopedics, Community Hospital Kliniken Nordoberpfalz AG Klinikum Weiden, Weiden in der Oberpfalz, Germany

    Matthias Schnabl

  3. Institute for Clinical Epidemiology and Biometry, University of Würzburg, Würzburg, Germany

    Peter U. Heuschmann

  4. Comprehensive Heart Failure Center, University of Würzburg, Würzburg, Germany

    Peter U. Heuschmann

  5. Department of Neurology, Ostalb-Klinikum Aalen, Aalen, Germany

    Eric Jüttler

  6. RKU – University and Rehabilitation Hospitals Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany

    Hermann Neugebauer

Authors
  1. Hermann Neugebauer
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  2. Matthias Schnabl
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  4. Peter U. Heuschmann
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for the IGNITE Study Group (Initiative of German NeuroIntensive Trial Engagement)

Corresponding author

Correspondence to Hermann Neugebauer.

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Conflict of interest

H.N. received travel grants from Boehringer Ingelheim. P.U.H. received in the recent years research support from the European Union, the Federal Ministry of Education and Research (BMBF) in Germany, the German Stroke Foundation, and the Charité—Universitätsmedizin Berlin. E.J. received research grants from the German Research Foundation (DFG) and from the Federal Ministry of Education and Research (BMBF), and speaker’s honoraria and travel grants from Bristol-Myers Squibb, Bayer, and from Boehringer Ingelheim. M.S. and D.L. do not report any disclosures. The study was investigator-driven and not industry-sponsored.

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Neugebauer, H., Schnabl, M., Lulé, D. et al. Attitudes of Patients and Relatives Toward Disability and Treatment in Malignant MCA Infarction. Neurocrit Care 26, 311–318 (2017). https://doi.org/10.1007/s12028-016-0362-7

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  • DOI: https://doi.org/10.1007/s12028-016-0362-7

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