Clinician, patient, and carer views on neuromodulation for epilepsy: is there rationale for a randomised controlled trial of VNS vs. DBS?

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). To assess stakeholder views on these treatments and their willingness to participate in a clinical trial comparing VNS and DBS for DRE. 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. 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. 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. • Surveyed clinicians see value in a VNS vs. DBS trial. • Patients consider seizure control and quality of life as key trial outcomes. • Concerns about VNS/DBS include surgery risks, side effects, and battery changes. • Over half of surveyed patients (52.6%) would consider joining a trial. • Findings inform future neuromodulation research and trial design.