Strzelczyk Adam, Zschebek Gerda, Bauer Sebastian, Baumgartner Christoph, Grond Martin, Hermsen Anke, Kieslich Matthias, Krämer Günter, Kurlemann Gerhard, May Theodor W, Mayer Thomas, Neubauer Bernd A, Pfäfflin Margarete, Plecko Barbara, Ryvlin Philippe, Schubert-Bast Susanne, Stefan Hermann, Trinka Eugen, Knake Susanne, Seifart Carola, Rosenow Felix
Epilepsy Center Hessen, Philipps-University, Marburg, Germany.
Epilepsy Center Frankfurt Rhine-Main, Goethe University, Frankfurt, Germany.
Epilepsia. 2016 Apr;57(4):612-20. doi: 10.1111/epi.13337. Epub 2016 Feb 22.
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.
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.
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.
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.
调查奥地利、德国和瑞士的神经科医生及神经儿科医生对癫痫性猝死（SUDEP）及其他癫痫风险因素咨询的态度，并确定与不讨论SUDEP相关的因素。
2014年向约5000名神经科医生和神经儿科医生发放问卷，内容涉及受访者的人口统计学信息、工作环境，以及他们讨论SUDEP的频率、抗惊厥药物的自杀意念、驾驶限制和日常生活活动中的风险。
共完成519份调查问卷（受访者平均年龄：45.5岁，女性占41.6%，成人神经科医生占66.9%，神经儿科医生占31.0%）。少数（2.7%）报告称他们会向所有患者咨询SUDEP，8.7%大部分时间（50 - 90%）会咨询，20.8%有时（10 - 49%）会咨询，44.5%很少（1 - 9%）会咨询，23.3%报告根本不就SUDEP进行咨询。相比之下，92.9%报告称他们会向所有患者咨询驾驶限制，81.5%会咨询日常生活活动中的风险。部分患者（59.0%）讨论过自杀意念，所有患者中讨论过的占3.3%，而35.1%的受访者报告从未讨论过自杀意念。不讨论SUDEP的独立预测因素包括未接受额外的癫痫培训、过去无或有不确定的SUDEP病例、从业年限<10年、每季度诊治的癫痫患者<25例，以及认为SUDEP预防无后果的观点。认为SUDEP是特定患者群体的风险因素以及应讨论所有风险的态度可预测对SUDEP的咨询。
我们的研究结果显示，在关于SUDEP或自杀导致的过早死亡的讨论方面，指南与实践之间存在差异。相当一部分神经科医生和神经儿科医生根本不讨论这两者。这与普遍存在的关于驾驶限制的教育形成对比。在医生中传播关于潜在预防策略的知识可能会增加讨论的可能性。在此过程中，临床实践指南受到大多数医生的欢迎。
