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Between Surgery and Science: Patient Journeys in Deep Brain Stimulation Local Field Potential Research.

Teresa Scott1, Lucia Ricciardi2, Michael G Hart1

  • 1Department of Psychology and Neuroscience, City St George's, University of London, Cranmer Terrace, London, UK; Department of Neurosurgery, Atkinson Morley Wing, St George's Hospital, London, UK.

Neuromodulation : Journal of the International Neuromodulation Society
|March 30, 2026
PubMed
Summary
This summary is machine-generated.

Patients in externalized deep brain stimulation (DBS) research reported high satisfaction, driven by altruism. They valued sharing findings and suggested improvements for future DBS studies.

Keywords:
Deep brain stimulationParkinson’s diseasedystoniaessential tremorlocal field potentials

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Area of Science:

  • Neuroscience
  • Clinical Research
  • Patient-Reported Outcomes

Background:

  • Externalized deep brain stimulation (DBS) lead recordings offer insights into Parkinson's disease, essential tremor, and dystonia.
  • Adaptive DBS development relies on local field potential (LFP) data.
  • Patient experiences in externalized DBS LFP research are not well understood.

Purpose of the Study:

  • To evaluate patient satisfaction with externalized DBS LFP research participation.
  • To understand patient motivations for joining these studies.
  • To assess the perceived burden of participating in postoperative externalized DBS LFP research.

Main Methods:

  • Mixed-method analysis of telephone surveys and semistructured interviews.
  • Thematic analysis of interview data.
  • Descriptive statistics for demographic data and category comparisons.

Main Results:

  • 47 patients (24 PD, 12 ET, 11 dystonia) participated.
  • Altruism was the primary motivation; most reported no personal benefits but felt reassured.
  • 88.7% had a positive experience, with burdens including experimental paradigms, travel, and hospital stay.

Conclusions:

  • High patient satisfaction was reported in externalized DBS research, mainly due to altruism.
  • Participants emphasized the importance of receiving research findings and desired greater involvement.
  • Understanding patient perspectives can enhance future trial design and delivery for DBS research.