title: Attitudes of Patients and Relatives Toward Disability and Treatment in Malignant MCA Infarction.
abstract: 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.
  
  
  
  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.
  
  
  
  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).
  
  
  
  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.
authors.affiliation: Department of Neurology, University of Ulm, Ulm, Germany. Hermann.Neugebauer@uni-ulm.de.|RKU - University and Rehabilitation Hospitals Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany. Hermann.Neugebauer@uni-ulm.de.
authors.forename: Hermann
authors.identifier: 0000-0003-3759-356X
authors.initials: H
authors.lastname: Neugebauer
authors.affiliation: Department of Trauma Surgery and Orthopedics, Community Hospital Kliniken Nordoberpfalz AG Klinikum Weiden, Weiden in der Oberpfalz, Germany.
authors.forename: Matthias
authors.initials: M
authors.lastname: Schnabl
authors.affiliation: Department of Neurology, University of Ulm, Ulm, Germany.
authors.forename: Dorothée
authors.initials: D
authors.lastname: Lulé
authors.affiliation: Institute for Clinical Epidemiology and Biometry, University of Würzburg, Würzburg, Germany.|Comprehensive Heart Failure Center, University of Würzburg, Würzburg, Germany.
authors.forename: Peter U
authors.initials: PU
authors.lastname: Heuschmann
authors.affiliation: Department of Neurology, University of Ulm, Ulm, Germany.|Department of Neurology, Ostalb-Klinikum Aalen, Aalen, Germany.
authors.forename: Eric
authors.initials: E
authors.lastname: Jüttler
mesh_terms: D000328:Adult; D000368:Aged; D001037:Aphasia / Q000209:etiology / Q000628:therapy*; D002545:Brain Ischemia / Q000628:therapy*; D005190:Family; D005260:Female; D005858:Germany; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D020244:Infarction, Middle Cerebral Artery / Q000150:complications* / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D020521:Stroke / Q000628:therapy*
keywords: Decompressive hemicraniectomy; Disability; Malignant middle cerebral artery infarction; Outcome