Adam Strzelczyk1,2, Gerda Zschebek1,3, Sebastian Bauer1,2, Christoph Baumgartner4, Martin Grond5, Anke Hermsen1,2, Matthias Kieslich6, Günter Krämer7, Gerhard Kurlemann8, Theodor W May9, Thomas Mayer10, Bernd A Neubauer11, Margarete Pfäfflin9, Barbara Plecko12, Philippe Ryvlin13, Susanne Schubert-Bast2,6,14, Hermann Stefan15, Eugen Trinka16, Susanne Knake1, Carola Seifart3, Felix Rosenow1,2. 1. Epilepsy Center Hessen, Philipps-University, Marburg, Germany. 2. Epilepsy Center Frankfurt Rhine-Main, Goethe University, Frankfurt, Germany. 3. Institutional Review Board, Medical Faculty, Philipps-University, Marburg, Germany. 4. Karl Landsteiner Institute for Clinical Epileptology and Cognitive Neurology, General Hospital Hietzing with Neurological Center Rosenhuegel, Vienna, Austria. 5. Department of Neurology, Kreisklinikum, Siegen, Germany. 6. Department of Neuropediatrics, Goethe University, Frankfurt, Germany. 7. Neurozentrum Bellevue, Zürich, Switzerland. 8. Department of Neuropediatrics, University Hospital, Münster, Germany. 9. Epilepsy Center Bethel, Bielefeld, Germany. 10. Epilepsy Center Kleinwachau, Radeberg, Germany. 11. Department of Neuropediatrics, Epilepsy Center Hessen, Justus-Liebig-University, Giessen, Germany. 12. Department of Neuropediatrics, University of Zürich, Zürich, Switzerland. 13. Department of Neurosciences, Lausanne University Hospital, Lausanne, Switzerland. 14. Department of Neuropediatrics, Ruprecht-Karls-University, Heidelberg, Germany. 15. Epilepsy Center Erlangen, University of Erlangen-Nuremberg, Erlangen, Germany. 16. Department of Neurology, Christian Doppler Medical Center, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria.
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. SIGNIFICANCE: 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. Wiley Periodicals, Inc.
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 epilepsypatients 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. SIGNIFICANCE: 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. Wiley Periodicals, Inc.
Authors: Johann Philipp Zöllner; David Neal Franz; Christoph Hertzberg; Rima Nabbout; Felix Rosenow; Matthias Sauter; Susanne Schubert-Bast; Adelheid Wiemer-Kruel; Adam Strzelczyk Journal: Orphanet J Rare Dis Date: 2020-01-21 Impact factor: 4.123
Authors: Rainer Surges; Stefan Conrad; Hajo M Hamer; Andreas Schulze-Bonhage; Anke M Staack; Bernhard J Steinhoff; Adam Strzelczyk; Eugen Trinka Journal: Nervenarzt Date: 2021-02-16 Impact factor: 1.214
Authors: Benzi M Kluger; Cornelia Drees; Thomas R Wodushek; Lauren Frey; Laura Strom; Mesha-Gay Brown; Jacquelyn L Bainbridge; Sarah N Fischer; Archana Shrestha; Mark Spitz Journal: Epilepsy Behav Date: 2020-11-24 Impact factor: 3.337
Authors: Rohit Shankar; Craig Newman; Alistair Gales; Brendan N McLean; Jane Hanna; Samantha Ashby; Matthew C Walker; Josemir W Sander Journal: Front Neurol Date: 2018-04-27 Impact factor: 4.003