Category: Parkinson's Disease (Other)
Objective: To identify unmet needs in deep brain stimulation (DBS) programming among patients with Parkinson’s disease (PD) in Japan by assessing outpatient burden and patient perspectives on telemedicine and remote programming.
Background: DBS is an established treatment for advanced PD, but access to DBS centers remains limited. Consequently, many patients face substantial travel and logistical burdens for follow-up care. Telemedicine-based DBS programming has emerged as a potential solution; however, real-world data on patient needs in Japan remain scarce.
Method: This study was approved by the institutional review board. We conducted a nationwide anonymous web-based survey distributed through the Japan Parkinson’s Disease Association between December 2024 and March 2025. Electronic informed consent was obtained within the survey. The questionnaire collected demographic and clinical characteristics, outpatient visit patterns, telemedicine experience, DBS history, experience with remote DBS programming, and willingness to use such services. Descriptive statistics were used.
Results: A total of 125 responses were analyzed. The mean age was 67.2 ± 8.6 years, and 52% were male. The mean interval from symptom onset to diagnosis was 2.3 ± 2.4 years, and disease duration after diagnosis was 8.6 ± 4.0 years. Overall, 13.6% (17/125) had prior telemedicine experience. DBS had been performed in 32.8% (41/125). Among DBS recipients, follow-up burden was mainly related to limited availability of programming centers and long travel distances rather than physical disability alone. Notably, 39.0% (16/41) reported symptom worsening related to outpatient visits, and 63.4% (26/41) required caregiver accompaniment during programming sessions. Only 7.3% (3/41) had experience with remote DBS programming. Among those without experience, 63.1% (24/38) expressed willingness to adopt remote programming if available. The most frequently requested services were remote stimulation adjustment and system checks.
Conclusion: Patients with DBS-treated PD in Japan experience considerable burdens related to access for device programming. Despite limited experience, interest in remote DBS programming was high. These findings highlight a significant unmet need and support the implementation of telemedicine-based DBS programming to improve access to specialized care and optimize long-term management of advanced PD.
To cite this abstract in AMA style:
K. Okuba, H. Kawasaki, K. Seo, M. Kobayashi, G. Oyama. Patient Perspectives on Telemedicine and Remote Deep Brain Stimulation Programming in Parkinson’s Disease: A Questionnaire Survey [abstract]. Mov Disord. 2026; 41 (suppl 1). https://www.mdsabstracts.org/abstract/patient-perspectives-on-telemedicine-and-remote-deep-brain-stimulation-programming-in-parkinsons-disease-a-questionnaire-survey/. Accessed October 1, 2026.« Back to 2026 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-perspectives-on-telemedicine-and-remote-deep-brain-stimulation-programming-in-parkinsons-disease-a-questionnaire-survey/