Ali Rushna, Elsayed Mona, Kaur Manpreet, Air Ellen, Mahmood Naznin, Constantinou Jules, Schwalb Jason
Department of Neurosurgery, Henry Ford Hospital, 2799 West Grand Blvd, Detroit, MI 48202, USA.
SIU Healthcare, SIU Clinic Bldg, 751 North Rutledge, Rm 3100, Springfield, IL 62702, USA.
J Neurol Sci. 2017 Apr 15;375:146-149. doi: 10.1016/j.jns.2017.01.057. Epub 2017 Jan 21.
Dravet syndrome (DS) is a rare genetic epilepsy syndrome which is particularly pharmacoresistant. Vagus nerve stimulation (VNS) is commonly used in the treatment of DS as an adjunct to medical therapy. A meaningful assessment of post-surgical outcomes with VNS is difficult given the rarity of the condition.
In a novel approach, we used social media to contact patients with DS to gather data on post-surgical seizure reduction and overall satisfaction with VNS.
A survey consisting of 10 questions was posted to a social media webpage for a DS support group moderated by the Dravet Syndrome Foundation. The results were analyzed and percentages reported using the integrated SurveyMonkey analytical software.
49 responses were received. We found that 28.5% of patients had a >50% reduction in seizure frequency after VNS placement, 55.8% felt that VNS therapy had helped to reduce seizure frequency, and 83.7% felt that seizure severity had improved. Of the respondents, 75% felt that they would undergo VNS implantation again for similar outcomes.
We employed the novel technique of using social media to gather the largest set of self-reported outcomes of VNS therapy for Dravet syndrome. As corroborated by prior studies of VNS effectiveness in Dravet syndrome, there is significant albeit limited improvement in seizure control. Our study shows that despite this limitation, it is still considered a useful treatment adjunct from a caregiver's perspective.
德雷维特综合征（DS）是一种罕见的遗传性癫痫综合征，对药物治疗具有特别的耐药性。迷走神经刺激（VNS）作为药物治疗的辅助手段，常用于DS的治疗。鉴于该病症的罕见性，对VNS术后结果进行有意义的评估较为困难。
采用一种新颖的方法，我们利用社交媒体联系DS患者，以收集术后癫痫发作减少情况及对VNS总体满意度的数据。
向由德雷维特综合征基金会主持的DS支持小组的社交媒体网页发布了一份包含10个问题的调查问卷。使用集成的SurveyMonkey分析软件对结果进行分析并报告百分比。
共收到49份回复。我们发现，28.5%的患者在植入VNS后癫痫发作频率降低了50%以上，55.8%的患者认为VNS治疗有助于降低癫痫发作频率，83.7%的患者认为癫痫发作严重程度有所改善。在受访者中，75%的人表示如果有类似结果，他们愿意再次接受VNS植入。
我们采用了利用社交媒体收集德雷维特综合征VNS治疗最大规模自我报告结果的新技术。正如先前关于VNS治疗DS有效性的研究所证实的那样，癫痫控制虽有显著改善，但仍有限。我们的研究表明，尽管存在这一局限性，但从护理人员的角度来看，它仍被认为是一种有用的治疗辅助手段。
