Participant Perceptions of Changes in Psychosocial Domains Following Participation in an Adaptive Deep Brain Stimulation Trial

Overview

Journal Brain Stimul

Publisher Elsevier

Specialty Neurology

Date 2023 Jun 17

PMID 37330169

Authors

Amanda R Merner

Kristin Kostick-Quenet

Tiffany A Campbell

Michelle T Pham

Clarissa E Sanchez

Laura Torgerson

Jill Robinson

Stacey Pereira

Simon Outram

Barbara A Koenig

Philip A Starr

Aysegul Gunduz

Kelly D Foote

Michael S Okun

Wayne Goodman

Amy L McGuire

Peter Zuk

Gabriel Lazaro-Munoz

Affiliations

Soon will be listed here.

Abstract

Background: There has been substantial controversy in the neuroethics literature regarding the extent to which deep brain stimulation (DBS) impacts dimensions of personality, mood, and behavior.

Objective/hypothesis: Despite extensive debate in the theoretical literature, there remains a paucity of empirical data available to support or refute claims related to the psychosocial changes following DBS.

Methods: A mixed-methods approach was used to examine the perspectives of patients who underwent DBS regarding changes to their personality, authenticity, autonomy, risk-taking, and overall quality of life.

Results: Patients (n = 21) who were enrolled in adaptive DBS trials for Parkinson's disease, essential tremor, obsessive-compulsive disorder, Tourette's syndrome, or dystonia participated. Qualitative data revealed that participants, in general, reported positive experiences with alterations in what was described as 'personality, mood, and behavior changes.' The majority of participants reported increases in quality of life. No participants reported 'regretting the decision to undergo DBS.'

Conclusion(s): The findings from this patient sample do not support the narrative that DBS results in substantial adverse changes to dimensions of personality, mood, and behavior. Changes reported as "negative" or "undesired" were few in number, and transient in nature.

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References

Merner A, Fins J, Lazaro-Munoz G . Brain Device Research and the Underappreciated Role of Care Partners before, during, and Post-Trial. AJOB Neurosci. 2022; 13(4):236-239. PMC: 9639607. DOI: 10.1080/21507740.2022.2126548. View

Pham U, Solbakk A, Skogseid I, Toft M, Pripp A, Konglund A . Personality changes after deep brain stimulation in Parkinson's disease. Parkinsons Dis. 2015; 2015:490507. PMC: 4325225. DOI: 10.1155/2015/490507. View

de Haan S, Rietveld E, Stokhof M, Denys D . Becoming more oneself? Changes in personality following DBS treatment for psychiatric disorders: Experiences of OCD patients and general considerations. PLoS One. 2017; 12(4):e0175748. PMC: 5398533. DOI: 10.1371/journal.pone.0175748. View

Appleby B, Duggan P, Regenberg A, Rabins P . Psychiatric and neuropsychiatric adverse events associated with deep brain stimulation: A meta-analysis of ten years' experience. Mov Disord. 2007; 22(12):1722-8. DOI: 10.1002/mds.21551. View

Castelli L, Perozzo P, Zibetti M, Crivelli B, Morabito U, Lanotte M . Chronic deep brain stimulation of the subthalamic nucleus for Parkinson's disease: effects on cognition, mood, anxiety and personality traits. Eur Neurol. 2006; 55(3):136-44. DOI: 10.1159/000093213. View

Pugh J . Clarifying the Normative Significance of 'Personality Changes' Following Deep Brain Stimulation. Sci Eng Ethics. 2020; 26(3):1655-1680. PMC: 7286862. DOI: 10.1007/s11948-020-00207-3. View

Daniele A, Albanese A, Contarino M, Zinzi P, Barbier A, Gasparini F . Cognitive and behavioural effects of chronic stimulation of the subthalamic nucleus in patients with Parkinson's disease. J Neurol Neurosurg Psychiatry. 2003; 74(2):175-82. PMC: 1738273. DOI: 10.1136/jnnp.74.2.175. View

Cruz S, Gutierrez-Rojas L, Gonzalez-Domenech P, Diaz-Atienza F, Martinez-Ortega J, Jimenez-Fernandez S . Deep brain stimulation in obsessive-compulsive disorder: Results from meta-analysis. Psychiatry Res. 2022; 317:114869. DOI: 10.1016/j.psychres.2022.114869. View

Volkmann J, Allert N, Voges J, Weiss P, Freund H, Sturm V . Safety and efficacy of pallidal or subthalamic nucleus stimulation in advanced PD. Neurology. 2001; 56(4):548-51. DOI: 10.1212/wnl.56.4.548. View

10.

Lazaro-Munoz G, Pham M, Munoz K, Kostick-Quenet K, Sanchez C, Torgerson L . Post-trial access in implanted neural device research: Device maintenance, abandonment, and cost. Brain Stimul. 2022; 15(5):1029-1036. PMC: 9588741. DOI: 10.1016/j.brs.2022.07.051. View

11.

Kubu C, Ford P, Wilt J, Merner A, Montpetite M, Zeigler J . Pragmatism and the Importance of Interdisciplinary Teams in Investigating Personality Changes following DBS. Neuroethics. 2020; 2019. PMC: 7500511. DOI: 10.1007/s12152-019-09418-3. View

12.

Lhommee E, Klinger H, Thobois S, Schmitt E, Ardouin C, Bichon A . Subthalamic stimulation in Parkinson's disease: restoring the balance of motivated behaviours. Brain. 2012; 135(Pt 5):1463-77. DOI: 10.1093/brain/aws078. View

13.

Munoz K, Blumenthal-Barby J, Storch E, Torgerson L, Lazaro-Munoz G . Pediatric Deep Brain Stimulation for Dystonia: Current State and Ethical Considerations. Camb Q Healthc Ethics. 2020; 29(4):557-573. PMC: 9426302. DOI: 10.1017/S0963180120000316. View

14.

Krause P, Volzmann S, Ewert S, Kupsch A, Schneider G, Kuhn A . Long-term effects of bilateral pallidal deep brain stimulation in dystonia: a follow-up between 8 and 16 years. J Neurol. 2020; 267(6):1622-1631. PMC: 8592956. DOI: 10.1007/s00415-020-09745-z. View

15.

Martinez-Ramirez D, Jimenez-Shahed J, Leckman J, Porta M, Servello D, Meng F . Efficacy and Safety of Deep Brain Stimulation in Tourette Syndrome: The International Tourette Syndrome Deep Brain Stimulation Public Database and Registry. JAMA Neurol. 2018; 75(3):353-359. PMC: 5885852. DOI: 10.1001/jamaneurol.2017.4317. View

16.

Hennink M, Kaiser B . Sample sizes for saturation in qualitative research: A systematic review of empirical tests. Soc Sci Med. 2021; 292:114523. DOI: 10.1016/j.socscimed.2021.114523. View

17.

de Haan S, Rietveld E, Stokhof M, Denys D . The phenomenology of deep brain stimulation-induced changes in OCD: an enactive affordance-based model. Front Hum Neurosci. 2013; 7:653. PMC: 3794192. DOI: 10.3389/fnhum.2013.00653. View

18.

Tsai H, Chen S, Tsai S, Hung H, Chang C . Hypomania following bilateral ventral capsule stimulation in a patient with refractory obsessive-compulsive disorder. Biol Psychiatry. 2010; 68(2):e7-8. DOI: 10.1016/j.biopsych.2010.04.001. View

19.

Schupbach M, Gargiulo M, Welter M, Mallet L, Behar C, Houeto J . Neurosurgery in Parkinson disease: a distressed mind in a repaired body?. Neurology. 2006; 66(12):1811-6. DOI: 10.1212/01.wnl.0000234880.51322.16. View

20.

Thobois S, Ardouin C, Lhommee E, Klinger H, Lagrange C, Xie J . Non-motor dopamine withdrawal syndrome after surgery for Parkinson's disease: predictors and underlying mesolimbic denervation. Brain. 2010; 133(Pt 4):1111-27. DOI: 10.1093/brain/awq032. View