Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial

Amanda R Merner¹, Kristin Kostick-Quenet², Tiffany A Campbell¹, Michelle T Pham³, Clarissa E Sanchez², Laura Torgerson², Jill Robinson², Stacey Pereira², Simon Outram⁴, Barbara A Koenig⁴, Philip A Starr⁵, Aysegul Gunduz⁶, Kelly D Foote⁷, Michael S Okun⁷, Wayne Goodman⁸, Amy L McGuire², Peter Zuk¹, Gabriel Lázaro-Muñoz⁹

Affiliations

¹ Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States.
² Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States.
³ Center for Bioethics and Social Justice, Michigan State University, East Fee Hall, 965 Wilson Road Rm A-126, East Lansing, MI, 48824, United States.
⁴ Program in Bioethics, University of California, San Francisco, 490 Illinois Street, San Francisco, CA, 94143, United States.
⁵ Department of Neurological Surgery, University of California, San Francisco, 400 Parnassus Avenue, San Francisco, CA, 94143, United States.
⁶ Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States; Department of Biomedical Engineering, University of Florida, 1275 Center Drive, Biomedical Science Building, JG283, Gainesville, FL, 32611, United States.
⁷ Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States.
⁸ Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine, 1977 Butler Blvd Suite E4.100, Houston, TX, 77030, United States.
⁹ Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States; Department of Psychiatry, Massachusetts General Hospital, 55 Fruit Street, Boston, MA, 02114, United States. Electronic address: glazaro@hms.harvard.edu.

PMID: 37330169
PMCID: PMC10529988
DOI: 10.1016/j.brs.2023.06.007

Clinical Trial

Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial

Amanda R Merner et al. Brain Stimul. 2023 Jul-Aug.

. 2023 Jul-Aug;16(4):990-998.

doi: 10.1016/j.brs.2023.06.007. Epub 2023 Jun 15.

Authors

Affiliations

¹ Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States.
² Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States.
³ Center for Bioethics and Social Justice, Michigan State University, East Fee Hall, 965 Wilson Road Rm A-126, East Lansing, MI, 48824, United States.
⁴ Program in Bioethics, University of California, San Francisco, 490 Illinois Street, San Francisco, CA, 94143, United States.
⁵ Department of Neurological Surgery, University of California, San Francisco, 400 Parnassus Avenue, San Francisco, CA, 94143, United States.
⁶ Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States; Department of Biomedical Engineering, University of Florida, 1275 Center Drive, Biomedical Science Building, JG283, Gainesville, FL, 32611, United States.
⁷ Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States.
⁸ Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine, 1977 Butler Blvd Suite E4.100, Houston, TX, 77030, United States.
⁹ Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States; Department of Psychiatry, Massachusetts General Hospital, 55 Fruit Street, Boston, MA, 02114, United States. Electronic address: glazaro@hms.harvard.edu.

PMID: 37330169
PMCID: PMC10529988
DOI: 10.1016/j.brs.2023.06.007

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.

Keywords: Deep brain stimulation; Ethics; Neuroethics; Neuromodulation; Neurotechnology; Personality.

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Conflict of interest statement

Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

References

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Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial

Affiliations

Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical