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Capturing Initial Understanding and Impressions of Surgical Therapy for Parkinson's Disease

 By Somnath Das and Sunidhi Ramesh

Image courtesy of Wikimedia Commons
Foreword: This article references a recently published study by authors Somnath Das and Sunidhi Ramesh. Both studied at Thomas Jefferson University and previously completed undergraduate neuroethics coursework at Emory University. The study represents a culmination of their interests in clinical medicine, neuroscience, and neuroethics. 

Characterizing the decision to undergo surgery for neurological disorders is an emerging area of investigation involving patients, clinicians, and ethicists. Patient hesitancy to brain surgery may be due to strong, potentially exaggerated fears of surgical risk. Despite living with the burden and stigma of neurological diseases, patients may be hesitant to receive surgical therapy, even if the therapy is assured to stop their disease process without causing harm (2). Deep brain stimulation (DBS) poses a unique area for investigators – the patient has to balance the risks of undergoing surgery and living with an implanted device with the benefits of relief of motor symptoms (3). Numerous discussions in neuroethics have certainly discussed and assessed DBS threats to personhood and normality (4).  However, patient motivations and fears of undergoing DBS surgery are only just beginning to be elucidated – with the majority of studies assessing patients that have undergone surgery or are surgical candidates (5-8).

While DBS surgery is effective at treating motor symptoms and quality of life (9-11) for patients with Parkinson’s disease (PD), it is estimated that only 10-15% of eligible patients are referred to treatment centers (12). Importantly, PD patients tend to be highly aware of DBS as a treatment option since its FDA approval in 2002 (6). The prevalence of information documents, celebrity discussions (e.g. Michael J. Fox), online forums, and PD support groups are factors that contribute towards patient awareness of DBS therapy. Therefore, it can be reasonably inferred that patients are not hesitant towards DBS surgery because of them not being aware of the procedure. 

In our study, we sought to survey patients in the general PD community about their impressions of DBS. Our study aimed to capture conceptions of hypothetical surgery for PD, sources of information for DBS awareness, and conceptions of DBS. Being that we were some of the first investigators to sample the general PD community about DBS, we developed a survey that was administered during patient clinic visits after follow-up with their neurologists. Based on consultation with prior literature (2, 6), a neurosurgeon, and a neurologist, we developed a 30 question Likert-item/multiple choice survey.

Table 1: Demographics

A total of 102 patients completed the survey, with 82 reporting familiarity with DBS (Figure 1). When asked if they would undergo a hypothetical, risk-free, curative brain surgery for their PD, 98 patients (96.1%) responded “yes.” Among patients who reported familiarity with DBS (82), the majority reported first hearing about it from the internet or from a physician (Figure 1). One-half of our DBS-aware patients agreed that it is an effective treatment for PD. Over three-fourths agreed that DBS is invasive, and about one-fifth agreed that DBS is reversible. About one-third of the cohort agreed that they are concerned about various threats to normality (i.e., appearance, personality, mood, and ability to perform daily tasks). Approximately 40% of patients were concerned about DBS costs and insurance, and over three-fifths of our cohort agreed that DBS is a last resort therapy reserved for patients with advanced PD. Initial source of information did not correlate with responses to any survey questions.

Our data shows that patients in the PD community may hold varying conceptions of DBS effectiveness, and they tend to have strong perceptions of surgical risk. While these factors do not directly address DBS underutilization, our study is one of the first to highlight that commonly used terms for DBS such as “minimally-invasive” and “reversible” may not necessarily align with patient conceptions of implantation. Being that patients strongly prefer to be the arbiters of the decision to undergo DBS (8), there is a critical need to involve the patients in discussions of DBS as a treatment option at earlier time-points of their care.

Figure 1: Impressions of DBS Among DBS-aware PD Patients


Following DBS surgery, patients are tasked with adjusting to a new identity with the device – bringing alleviation of symptoms and potential adverse effects (13). The burden of normality can often result in significant psychosocial stress for the patient due a biographical disruption following implantation (14). For PD patients, some describe a sense of relief without their invasive tremor, and they ascribe this feeling to being able to once again perform activities of daily living despite having adverse effects from the device (3). However, some patients may be dissatisfied with their treatment despite motor improvement (15), and patient quality of life many not be substantially improved by targeting the motor symptoms of PD alone (16). 

Thus, PD patients are tasked with not only weighing the surgical risks, but also the psychosocial impacts that the device will have on their biography. Our study highlights evidence of an early decision burden within the general PD community amongst those who are aware of DBS – only half our cohort agrees that DBS is an effective treatment for PD, yet one-third are concerned about threats to normalcy, and much higher proportions are concerned about inherent surgical risks. Future studies are needed to examine how perceptions of DBS effectiveness impact impressions of surgical risks and threats to normality. 

Finally, we note our cohort’s perception of DBS as a last-resort therapy for advanced PD. The EARLYSTIM trials demonstrated that in PD patients with early motor complications (average disease duration of 7.5 years), stimulation to the subthalamic nucleus plus medical therapy was superior to best medical therapy alone with regards to improving motor disability, levodopa-associate motor complications, and quality of life (PDQ-39) (17). However, patients may not be ready for DBS, even if they meet the EARLYSTIM criteria (6). There may be a relational context to how these patients responded to the impressions of DBS effectiveness – some may have interpreted this question as effective for me, at this point in time. 

The decision to implant a neural device for PD is a complex decision ultimately driven by the patient, in consultation with multiple sources of information, including their physician and internet sources. Our pilot investigation highlights some of these dimensions while bringing to attention factors that had not been considered in prior studies. Patients in the general PD community are highly likely to be aware of DBS therapy, and have distinct views about the therapy that may not have been captured by our survey alone. Our data strongly supports the need for providers to have frank discussions with their patient about DBS and their goals for surgical therapies at earlier time-points of care. These discussions may help address patient concerns about surgery while also addressing the decision burden of having to live with continuous neurostimulation. 

Future considerations for this work should include clarifying the “tipping point” for patients considering surgical therapy for PD – meaning, at what time-point in their disease they would be willing to consider surgical therapy to treat PD, and can this time-point be altered by discussions of patient goals and motivations in regard to pursuing surgery? Our study suggests that DBS is persistently viewed as a last resort therapy; however, specific patients may benefit from undergoing surgery at earlier time-points (17). Furthermore, our study solely points out perceptions of DBS effectiveness on quantitative scale – further evaluations of this impression (e.g., narrative studies) may prove to be a fruitful window into how patients in the general PD community view their own willingness to consider surgery at a specific point of time. Finally, DBS is neither curative or fully restorative; however, there are studies that suggest that DBS may alter patients’ underlying disease process (18, 19). Our data suggests that patients do not imagine undergoing surgery followed by a life of continuous neurostimulation; this perception should be investigated further, and perhaps the marketing of DBS as “reversible” should be reconsidered. Thus, we hope that our study serves as a useful starting point for deeper investigations of patient motivations and fears of surgical therapies for neurological disease. 


References
  1. Das, S., C.M. Matias, S. Ramesh, et al., Capturing Initial Understanding and Impressions of Surgical Therapy for Parkinson's Disease. Frontiers in Neurology, 2021. 12(214). doi:10.3389/fneur.2021.605959
  2. Prus, N. and A.C. Grant, Patient beliefs about epilepsy and brain surgery in a multicultural urban population. Epilepsy Behav, 2010. 17(1): p. 46-9. doi:10.1016/j.yebeh.2009.09.022
  3. Hariz, G.M., P. Limousin, and K. Hamberg, "DBS means everything - for some time". Patients' Perspectives on Daily Life with Deep Brain Stimulation for Parkinson's Disease. J Parkinsons Dis, 2016. 6(2): p. 335-47. doi:10.3233/jpd-160799
  4. Baylis, F., “I Am Who I Am”: On the Perceived Threats to Personal Identity from Deep Brain Stimulation. Neuroethics, 2013. 6(3): p. 513-526. doi:10.1007/s12152-011-9137-1
  5. Hamberg, K. and G.M. Hariz, The decision-making process leading to deep brain stimulation in men and women with parkinson's disease - an interview study. BMC Neurol, 2014. 14: p. 89. doi:10.1186/1471-2377-14-89
  6. Sperens, M., K. Hamberg, and G.M. Hariz, Are Patients Ready for "EARLYSTIM"? Attitudes towards Deep Brain Stimulation among Female and Male Patients with Moderately Advanced Parkinson's Disease. Parkinsons Dis, 2017. 2017: p. 1939831. doi:10.1155/2017/1939831
  7. Kim, M.R., J.Y. Yun, B. Jeon, et al., Patients' reluctance to undergo deep brain stimulation for Parkinson's disease. Parkinsonism Relat Disord, 2016. 23: p. 91-4. doi:10.1016/j.parkreldis.2015.11.010
  8. Nijhuis, F.A.P., L. van den Heuvel, B.R. Bloem, et al., The Patient's Perspective on Shared Decision-Making in Advanced Parkinson's Disease: A Cross-Sectional Survey Study. Front Neurol, 2019. 10: p. 896. doi:10.3389/fneur.2019.00896
  9. Fox, S.H., R. Katzenschlager, S.Y. Lim, et al., The Movement Disorder Society Evidence-Based Medicine Review Update: Treatments for the motor symptoms of Parkinson's disease. Mov Disord, 2011. 26 Suppl 3: p. S2-41. doi:10.1002/mds.23829
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  11. Karl, J.A., B. Ouyang, K. Colletta, et al., Long-Term Satisfaction and Patient-Centered Outcomes of Deep Brain Stimulation in Parkinson's Disease. Brain Sci, 2018. 8(4). doi:10.3390/brainsci8040060
  12. Lange, M., J. Mauerer, J. Schlaier, et al., Underutilization of deep brain stimulation for Parkinson's disease? A survey on possible clinical reasons. Acta Neurochir (Wien), 2017. 159(5): p. 771-778. doi:10.1007/s00701-017-3122-3
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  14. Bosanac, P., B.E. Hamilton, J. Lucak, et al., Identity challenges and ‘burden of normality’ after DBS for severe OCD: a narrative case study. BMC Psychiatry, 2018. 18(1): p. 186. doi:10.1186/s12888-018-1771-2
  15. Maier, F., C.J. Lewis, N. Horstkoetter, et al., Subjective perceived outcome of subthalamic deep brain stimulation in Parkinson's disease one year after surgery. Parkinsonism Relat Disord, 2016. 24: p. 41-7. doi:10.1016/j.parkreldis.2016.01.019
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  18. Ruge, D., L. Cif, P. Limousin, et al., Shaping reversibility? Long-term deep brain stimulation in dystonia: the relationship between effects on electrophysiology and clinical symptoms. Brain, 2011. 134(Pt 7): p. 2106-15. doi:10.1093/brain/awr122
  19. Hacker, M.L., M.R. DeLong, M. Turchan, et al., Effects of deep brain stimulation on rest tremor progression in early stage Parkinson disease. Neurology, 2018. 91(5): p. e463-e471. doi:10.1212/wnl.0000000000005903

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Somnath Das, MD is a current PGY-1 resident in Neurosurgery at the University of Alabama Birmingham. He graduated in May 2017 from Emory University with a BS in Neuroscience & Behavioral Biology, having taken both undergraduate and graduate neuroethics coursework and previously serving as a "Neuroethics Ambassador." His interest in patient perspectives of emerging neurotechnologies started during his time at Emory. He considers Dr. Karen Rommelfanger a significant source of inspiration and mentorship. He is excited to start residency soon, and aims to integrate his prior neuroethics experience into neurosurgical research and patient care.  



Sunidhi Ramesh is an MD Candidate at Sidney Kimmel Medical College at Thomas Jefferson University. She is also the Managing Editor of The Neuroethics Blog and an Editorial Intern for The American Journal of Bioethics Neuroscience.  Sunidhi graduated Phi Beta Kappa from Emory University in 2018, with degrees in sociology and neuroscience. She works on research spanning neurology, neurosurgery, ophthalmology, and sociology, particularly focused on the intersections of science, disparity, social justice, and ethics. She will be applying to ophthalmology residency programs in the Fall.



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Das, S. & Ramesh, S. (2021). Capturing Initial Understanding and Impressions of Surgical Therapy for Parkinson's Disease. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2021/06/capturing-initial-understanding-and.html
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