title: Predictors of and attitudes toward counseling about SUDEP and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians.
abstract: OBJECTIVE
  To examine the attitudes toward counseling about sudden unexpected death in epilepsy (SUDEP) and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians, and to determine factors associated with not discussing SUDEP.
  
  
  METHODS
  Questionnaires were sent to approximately 5,000 neurologists and neuropediatricians in 2014 regarding respondents' demographics, their working environments, and how often they discussed SUDEP, suicidal ideations on anticonvulsive medication, driving restrictions, and risks in daily life activities.
  
  
  RESULTS
  In total, 519 surveys were completed (respondents' mean age: 45.5 years, 41.6% female, 66.9% adult neurologists, 31.0% neuropediatricians). A minority of 2.7% reported that they counseled all of their patients on SUDEP, 8.7% counseled most of the time (50-90%), 20.8% sometimes (10-49%), 44.5% rarely (1-9%), and 23.3% reported not counseling about SUDEP at all. In contrast, 92.9% reported that they counseled all patients about driving restrictions and 81.5% about risks in daily life activities. Suicidal ideations were discussed in 59.0% for some and in 3.3% for all patients, whereas 35.1% of respondents reported never discussing suicidal ideations. Independent predictors of not discussing SUDEP were no additional epilepsy training, no or uncertain SUDEP cases in the past, <10 years in practice, <25 epilepsy patients seen per quarter, and the opinion of a lack of consequences in SUDEP prevention. The opinion that SUDEP is a risk factor in particular patient groups and the attitude that all risks should be discussed predicted counseling on SUDEP.
  
  
  CONCLUSIONS
  Our findings show a discrepancy between guidelines and practice regarding the discussion of premature mortality due to SUDEP or suicidality. Both are not discussed at all by a substantial proportion of neurologists and neuropediatricians. This is in contrast to ubiquitous education about driving restrictions. Dissemination of knowledge among physicians about potential preventive strategies might increase the likelihood of discussion. Clinical practice guidelines are welcomed by the majority of physicians in this process.
authors.affiliation: Epilepsy Center Hessen, Philipps-University, Marburg, Germany.|Epilepsy Center Frankfurt Rhine-Main, Goethe University, Frankfurt, Germany.
authors.forename: Adam
authors.identifier: http://orcid.org/0000-0001-6288-9915
authors.initials: A
authors.lastname: Strzelczyk
authors.affiliation: Epilepsy Center Hessen, Philipps-University, Marburg, Germany.|Institutional Review Board, Medical Faculty, Philipps-University, Marburg, Germany.
authors.forename: Gerda
authors.initials: G
authors.lastname: Zschebek
authors.affiliation: Epilepsy Center Hessen, Philipps-University, Marburg, Germany.|Epilepsy Center Frankfurt Rhine-Main, Goethe University, Frankfurt, Germany.
authors.forename: Sebastian
authors.initials: S
authors.lastname: Bauer
authors.affiliation: Karl Landsteiner Institute for Clinical Epileptology and Cognitive Neurology, General Hospital Hietzing with Neurological Center Rosenhuegel, Vienna, Austria.
authors.forename: Christoph
authors.initials: C
authors.lastname: Baumgartner
authors.affiliation: Department of Neurology, Kreisklinikum, Siegen, Germany.
authors.forename: Martin
authors.initials: M
authors.lastname: Grond
authors.affiliation: Epilepsy Center Hessen, Philipps-University, Marburg, Germany.|Epilepsy Center Frankfurt Rhine-Main, Goethe University, Frankfurt, Germany.
authors.forename: Anke
authors.initials: A
authors.lastname: Hermsen
authors.affiliation: Department of Neuropediatrics, Goethe University, Frankfurt, Germany.
authors.forename: Matthias
authors.initials: M
authors.lastname: Kieslich
authors.affiliation: Neurozentrum Bellevue, Zürich, Switzerland.
authors.forename: Günter
authors.initials: G
authors.lastname: Krämer
authors.affiliation: Department of Neuropediatrics, University Hospital, Münster, Germany.
authors.forename: Gerhard
authors.initials: G
authors.lastname: Kurlemann
authors.affiliation: Epilepsy Center Bethel, Bielefeld, Germany.
authors.forename: Theodor W
authors.initials: TW
authors.lastname: May
authors.affiliation: Epilepsy Center Kleinwachau, Radeberg, Germany.
authors.forename: Thomas
authors.initials: T
authors.lastname: Mayer
authors.affiliation: Department of Neuropediatrics, Epilepsy Center Hessen, Justus-Liebig-University, Giessen, Germany.
authors.forename: Bernd A
authors.initials: BA
authors.lastname: Neubauer
authors.affiliation: Epilepsy Center Bethel, Bielefeld, Germany.
authors.forename: Margarete
authors.initials: M
authors.lastname: Pfäfflin
authors.affiliation: Department of Neuropediatrics, University of Zürich, Zürich, Switzerland.
authors.forename: Barbara
authors.initials: B
authors.lastname: Plecko
authors.affiliation: Department of Neurosciences, Lausanne University Hospital, Lausanne, Switzerland.
authors.forename: Philippe
authors.initials: P
authors.lastname: Ryvlin
authors.affiliation: Epilepsy Center Frankfurt Rhine-Main, Goethe University, Frankfurt, Germany.|Department of Neuropediatrics, Goethe University, Frankfurt, Germany.|Department of Neuropediatrics, Ruprecht-Karls-University, Heidelberg, Germany.
authors.forename: Susanne
authors.initials: S
authors.lastname: Schubert-Bast
authors.affiliation: Epilepsy Center Erlangen, University of Erlangen-Nuremberg, Erlangen, Germany.
authors.forename: Hermann
authors.initials: H
authors.lastname: Stefan
authors.affiliation: Department of Neurology, Christian Doppler Medical Center, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria.
authors.forename: Eugen
authors.initials: E
authors.lastname: Trinka
authors.affiliation: Epilepsy Center Hessen, Philipps-University, Marburg, Germany.
authors.forename: Susanne
authors.initials: S
authors.lastname: Knake
authors.affiliation: Institutional Review Board, Medical Faculty, Philipps-University, Marburg, Germany.
authors.forename: Carola
authors.initials: C
authors.lastname: Seifart
authors.affiliation: Epilepsy Center Hessen, Philipps-University, Marburg, Germany.|Epilepsy Center Frankfurt Rhine-Main, Goethe University, Frankfurt, Germany.
authors.forename: Felix
authors.initials: F
authors.lastname: Rosenow
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D001317:Austria / Q000453:epidemiology; D003376:Counseling / Q000379:methods*; D003645:Death, Sudden / Q000453:epidemiology* / Q000517:prevention & control; D004827:Epilepsy / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy; D005260:Female; D005544:Forecasting; D005858:Germany / Q000453:epidemiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D009462:Neurology / Q000379:methods; D010353:Patient Education as Topic / Q000379:methods*; D010372:Pediatrics / Q000379:methods; D010820:Physicians / Q000523:psychology*; D012307:Risk Factors; D011795:Surveys and Questionnaires; D013557:Switzerland / Q000453:epidemiology
keywords: Counseling; Driving; Drowning; Epilepsy; Sudden unexpected death in epilepsy patients; Suicide