Abstract
INTRODUCTION: This study aimed to gather UK clinician, patient, and carer perspectives on vagus nerve stimulation (VNS) and deep brain stimulation (DBS) to inform the design of clinical trials comparing these treatments for drug-resistant epilepsy (DRE). RESEARCH QUESTION: To assess stakeholder views on these treatments and their willingness to participate in a clinical trial comparing VNS and DBS for DRE. METHODS: Two surveys were conducted: one for clinicians in neurology, neurophysiology, and neurosurgery, and another for patients/carers. The estimated response rates were 2.7% and 0.008% for the surveys respectively. RESULTS: Among the 32 clinician responses all agreed VNS has a role in treating DRE, as did 94% for DBS. While 84% felt VNS had sufficient evidence for routine use, only 23% said the same for DBS. Median minimum age for treatment consideration was 5 years for VNS and 8 years for DBS. Clinicians agreed on the proposed trial's scientific validity (median Likert score 4/5) and interest in efficacy comparison (5/5); 72% would refer patients for the trial. Of the 38 patient/carer responses, 13% had VNS. Around one-third would consider VNS (32%) or DBS (34%). Concerns included procedure anxiety, side effects, and battery changes. While 53% were willing to enter the proposed trial, 84% preferred to choose their treatment.Key outcomes identified included seizure reduction, seizure freedom, quality of life, and SUDEP risk. DISCUSSION AND CONCLUSION: Clinician, patient, and carer insights highlight the need for robust evidence on VNS and DBS efficacy. These findings will guide future trials in managing DRE.