Use of social media to assess the effectiveness of vagal nerve stimulation in Dravet syndrome: A caregiver's perspective.
BACKGROUND
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.


OBJECTIVE
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.


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
Department of Neurosurgery, Henry Ford Hospital, 2799 West Grand Blvd, Detroit, MI 48202, USA. Electronic address: rali1@hfhs.org.
Rushna
R
Ali
SIU Healthcare, SIU Clinic Bldg, 751 North Rutledge, Rm 3100, Springfield, IL 62702, USA.
Mona
M
Elsayed
Department of Neurosurgery, Henry Ford Hospital, 2799 West Grand Blvd, Detroit, MI 48202, USA.
Manpreet
M
Kaur
Department of Neurosurgery, Henry Ford Hospital, 2799 West Grand Blvd, Detroit, MI 48202, USA.
Ellen
E
Air
Department of Neurology, Henry Ford Hospital, 2799 West Grand Blvd, Detroit, MI 48202, USA.
Naznin
N
Mahmood
Department of Neurology, Henry Ford Hospital, 2799 West Grand Blvd, Detroit, MI 48202, USA.
Jules
J
Constantinou
Department of Neurosurgery, Henry Ford Hospital, 2799 West Grand Blvd, Detroit, MI 48202, USA.
Jason
J
Schwalb
D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D004831:Epilepsies, Myoclonic / Q000628:therapy*; D005260:Female; D006306:Health Surveys; D006801:Humans; D007223:Infant; D008297:Male; D061108:Social Media; D016896:Treatment Outcome; D055536:Vagus Nerve Stimulation / Q000379:methods*; D055815:Young Adult
Dravet syndrome; Outcome analysis; Severe myoclonic epilepsy of infancy; Social media; Survey; Vagal nerve stimulation