Qualitative survey and interviews with 47 patients (PD, ET, dystonia) who participated in externalized DBS LFP research revealing high overall satisfaction driven by altruism, low perceived personal benefit, limited burdens (travel, costs, longer stays), and a strong desire for results feedback and…

Though it offers no new mechanistic or therapeutic targets, the study provides practical insights to improve trial design, consent, retention, and patient-centered delivery of LFP/adaptive DBS research, which can indirectly accelerate development and adoption of DBS-based therapies.

OBJECTIVES: For the past 25 years, local field potential (LFP) recordings from externalized deep brain stimulation (DBS) leads have provided unique insights into the pathophysiology of Parkinson's disease (PD), essential tremor (ET), and dystonia, contributing to the development of adaptive DBS. However, patient experiences in externalized DBS experimental studies remain underexplored. We aimed to evaluate patient satisfaction, motivations, and perceived burden from participating in postoperative externalized DBS LFP research. MATERIALS AND METHODS: Telephone surveys using questionnaires and semistructured interviews were conducted with patients involved in LFP research at St George's Hospital, London between 2019 and 2024. In a mixed-method analysis, the semistructured interviews were analyzed using thematic analysis, and descriptive statistics were used to present demographic data and compare categories. RESULTS: A total of 47 patients participated: 24 with PD, 12 with ET, and 11 with dystonia. Altruism and wanting to give something back were cited as primary reasons for trial participation. Although most did not perceive any personal benefits from participation, some experienced reassurance, gained knowledge, and felt minimal discomfort; 80.4% experienced no drawbacks, and 88.7% reported a positive overall experience. The most frequently reported burdens were the experimental paradigms, travel, financial costs, and a longer hospital stay. Participants stressed the importance of receiving information about trial findings and wished for greater involvement in the research. CONCLUSIONS: Participants reported high satisfaction with externalized DBS research participation, motivated primarily by altruism. They valued dissemination of research findings. Evaluating patient experience of trial participation and gaining insight into participants' perspectives may provide opportunities to enhance future trial design and delivery.