Perspectives on Deep Brain Stimulation and Its Earlier Use for Parkinson’s Disease: A Qualitative Study of US Patients

Abstract

Background: Deep brain stimulation (DBS) is being used earlier than was previously the case in the disease progression in people with Parkinson’s disease (PD). To explore preferences about the timing of DBS, we asked PD patients with DBS whether they would have preferred the implantation procedure to have occurred earlier after diagnosis. Methods: Twenty Michigan-based patients were interviewed about both their experiences with DBS as well as their attitudes regarding the possible earlier use of DBS. We used a structured interview, with both closed and open-ended questions. Interviews were transcribed verbatim and analyzed using a mixed-methods approach. Results: We found that the majority of our participants (72%) had high overall satisfaction with DBS in addressing motor symptoms (mean of 7.5/10) and quality of life (mean of 8.25/10). Participants were mixed about whether they would have undergone DBS earlier than they did, with five participants being unsure and the remaining nearly equally divided between yes and no. Conclusion: Patient attitudes on the early use of DBS were mixed. Our results suggest that while patients were grateful for improvements experienced with DBS, they would not necessarily have endorsed its implementation earlier in their disease progression. Larger studies are needed to further examine our findings.

Deep Brain Stimulation in Early-Stage Parkinson’s Disease: Patient Experience after 11 Years

“…Two prevailing motivations for enrollment in the early DBS trial arose in this study: (1) desire to help future PD patients by participating in research and (2) potential benefits of early DBS (i.e., maintaining careers and independence, preventing disability, and slowing disease progression). Prior studies investigating whether standard-of-care DBS patients would have preferred earlier DBS similarly cited slowing progression and regaining freedoms sooner as motivators, with the additional motivation of eliminating medication side effects earlier [ 27 ]. In contrast, key motivators for patients considering standard-of-care DBS include their worsening symptoms, family encouragement, and confidence in the recommendation of the physician [ 28 , 29 ].…”

“…This concern is likely to carry even greater weight in a population considering early DBS, as patients are still functioning well and do not yet see DBS as a last resort. While some PD patients certainly express hesitation to consider early DBS [ 27 ], there is a notable proportion of patients who indicate that the potential benefits may outweigh the risks [ 27 , 29 , 30 , 31 ]. Currently, early DBS is appropriately only offered in research studies, and a pivotal safety and efficacy study is needed to understand if DBS should be offered earlier in Parkinson’s disease.…”

Survival and Health Care Use After Deep Brain Stimulation for Parkinson’s Disease

“…If replicated, knowledge of survival benefits related to DBS surgery at an earlier age may narrow widespread clinician and patient perspectives regarding the earlier use of DBS for PD. 33,34 Randomized controlled trials (RCTs) and observational studies have examined differences in the risk of falling between PD patients treated with DBS or best medical therapy. One RCT found that DBS recipients (n = 121) were significantly more likely to experience injurious falls within 6 months of randomization than patients in the best medical therapy group (n = 134).…”

Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

“…Therefore, the results of qualitative studies are of great interest for neurologists and other clinicians as they serve to better understand the patients’ needs and tailor individualized treatment (e.g., choosing between DBS or medical pumps to treat motor fluctuations and dyskinesias). The available qualitative studies in the field have typically focused either on specific aspects of PD [ 40 , 41 , 42 ], the perception of DBS [ 38 , 43 ], or some side effects of DBS affecting patients’ personality or identity [ 44 , 45 , 46 ]. However, there are few studies with a comprehensive approach encompassing the patients’ experiences with both PD and DBS and deepening their perception of both [ 37 , 47 ].…”