Objective: To investigate reasons and factors influencing Parkinson’s patients’ decision to decline deep brain stimulation (DBS).

Background: While much research has focused on patients with Parkinson’s disease (PD) who elect to undergo DBS, less is known about those who decline it. Understanding the reasons and factors these patients consider is key to examine decisional needs, ethical considerations, and opportunities to support shared decision-making initiatives to allow for optimal patient-centered care.

Method: Semi-structured interviews were conducted with fourteen PD patients who had declined DBS. Participants discussed their decision-making processes, the role of family and healthcare support, reasons for declining DBS and factors weighing on their decision. Interviews were audio-recorded, transcribed verbatim, and analyzed using qualitative content analysis to identify recurring themes and patterns in participants’ responses.

Results: Analysis shows that perceived invasiveness and perception of symptoms still being manageable with medication where the two main reasons against DBS. Invasiveness included not only physical aspects of having DBS, but also the perceived burden of charging requirements, hardware management, and required programming visits. Decliners expressed uncertainty whether DBS could alleviate bothersome symptoms, though several did consider DBS as a potential treatment if their symptoms worsen or could not be well-managed by other treatments. Several decliners also expressed a desire for treatments that more holistically address PD rather than just motor symptoms, with alternative treatments being a key factor they weighed in their decision.

Conclusion: Overall, our results suggest that PD patients who decline DBS weighed not only the perceived benefits and risks. Considerations about invasiveness (beyond just the physical view of the term), symptom alleviation, and hope for future advances that can help them more holistically were relevant. Recognizing the complexity of reasons (often conflicting) and factors decliners have can inform patient-centered decision aids and shared decision-making strategies. Future work should examine how these differing perceptions influence openness to surgical and experimental therapies.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/reasons-and-factors-influencing-parkinsons-patients-decision-to-decline-deep-brain-stimulation/