Objective: To explore Parkinson’s patient experiences with Deep Brain Stimulation (DBS) and attitudes towards earlier use of DBS.

Background: In November 2015 the U.S. Food and Drug Administration (FDA) approved the use of DBS therapy in people with Parkinson’s disease (PD) “of at least four years duration and with a recent onset motor complications, or motor complications of longer-standing duration that are not adequately controlled with medication.” Even before the FDA’s change of indication, several groups had performed DBS earlier in the course of the disease, rather than as a last resort. To guide responsive policy, we sought the perspectives of patients who have undergone DBS, asking whether they would have preferred to have had the implantation procedure earlier than they did. Their insights will help guide policy formation regarding how early is “too early.”

Methods: Using a structured interview with both closed and open-ended questions,19 Michigan patients with PD (8 women), aged 53–71, who underwent DBS at a mean of 7.7 years post diagnosis, were interviewed about their experiences with DBS, and probed about the possible earlier use of DBS. The interviews were transcribed verbatim and analyzed using a mixed-method approach.

Results: Nearly a third of our participants (72%) had high overall satisfaction with DBS both in terms of addressing motor symptoms (mean of 7.5/10) and quality of life (mean of 8.25/10). On average neurologists suggested DBS, as the next treatment option, six years after diagnosis. Participants were mixed about whether they would have undergone DBS earlier than they did, with 5 participants being unsure and the remaining divided equally between yes and no. Those who would have agreed to earlier DBS mentioned that it is like low-hanging fruit, that they would have trusted their doctor if they have suggested it as beneficial, and the possibility of slowing the disease progression. Those who said they would not have agreed to earlier DBS mentioned that at that stage they did not consider themselves ill enough to undergo DBS, and they felt that medications were still working for them.

Conclusions: Patients’ perspectives on the early use of DBS are mixed. Our results suggest that while patients are grateful for improvements experienced with DBS, they generally did not endorse its implementation early in the disease progression.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/attitudes-toward-earlier-use-of-deep-brain-stimulation-among-patients-with-parkinsons-disease/