Abstract
BACKGROUND: Remote programming (RP) offers a convenient alternative for patients with isolated dystonia who have undergone deep brain stimulation (DBS). However, limited research has explored patients' attitudes toward RP and its clinical outcomes in this population. OBJECTIVE: This study aimed to assess patient perceptions of RP and its clinical efficacy in individuals with isolated dystonia who have undergone DBS. METHODS: A cross-sectional web-based survey on RP was conducted between April 25, 2024, and July 15, 2024, among patients with isolated dystonia who underwent DBS. The survey evaluated programming burdens and patient satisfaction. Additionally, a subgroup of patients underwent follow-up motor assessments using the Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS). RESULTS: A total of 46 patients completed the survey, and 14 patients who exclusively used RP for postoperative programming underwent motor assessments. Among participants, 40 (87%) reported that in-clinic programming sessions cost more than $42 per visit, with five patients incurring costs exceeding $421. Furthermore, 26 patients (57%) expressed a preference for RP as their primary programming method. Motor assessments of the 14 RP-only patients showed significant improvements, with BFMDRS disability scores decreasing by 30% (p = 0.045) and movement scores by 64% (P < 0.001). CONCLUSION: The study highlights the substantial burden of in-clinic DBS programming for patients with isolated dystonia and underscores the clinical and economic advantages of RP. These findings support RP as a viable and effective alternative for DBS programming.