Objective: To understand changes in patients’ desired control of the DBS stimulator in a consecutive series of subjects who underwent DBS for the treatment of PD.

Background: PD candidates for DBS often describe their motivation to seek out surgery in language that implies the desire to regain control over their bodies (e.g., reduce tremor, minimize motor fluctuations). Yet, in order to achieve greater control over their lives, DBS patients relinquish control over their bodies to the physician who adjusts the stimulator. We investigated subjects’ ratings of desired control of the stimulator prior to and after DBS and the relationship between those ratings to self-perceived global control.

Methods: A consecutive series of 52 patients with PD completed visual analog scales (VAS) in which subjects rated their desired control over the stimulator (10 representing greatest control) prior to DBS surgery. Subjects also rated their sense of global control on a VAS. The ratings were re-administered at 3 and 6 months post-surgery. Repeated measures ANOVAs were used to examine changes over time. The relationship between the control ratings over time was assessed using Pearson correlations.

Results: Most subjects were men (75%) with a mean age of 61.3 yrs. Subjects reported a significant improvement in their self ratings of global control (F(1,44)=13.9, p<.01) as a result of DBS (Baseline=6.7+/-2.7, Month 3=7.9+/- 2.2, Month 6=8.2 +/-1.7). In contrast, subjects’ desired control of the stimulator declined significantly over time (F(1,42)=11.8, p<.01; Baseline=6.2+/-3.5, Month 3= 4.9+/-3.9, Month 6=3.9+/-3.5). Changes in subjects’ perceptions of global control were significantly negatively correlated with changes in their desired stimulator control (r=-.31, p<0.05).

Conclusions: Patients with PD reported a significant decrease in their desire to control the stimulator over the course of DBS treatment that was significantly correlated with increases in their sense of global control over their lives in general. This is the first report, to our knowledge, that systematically assessed PD patients’ desire for stimulator control over the course of DBS. These initial findings have implications with respect to the development of patient controlled stimulator devices and suggest that relinquishing some aspects of control does not correspond to a similar loss of global control over one’s life in the context of DBS.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/an-investigation-of-parkinsons-disease-patients-desired-control-over-the-dbs-stimulator/