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

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 e...

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Main 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 Lázaro-Muñoz
Format: Article
Language:English
Published: Elsevier 2023-07-01
Series:Brain Stimulation
Subjects:
Online Access:http://www.sciencedirect.com/science/article/pii/S1935861X23018004
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author 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 Lázaro-Muñoz
author_facet 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 Lázaro-Muñoz
author_sort Amanda R. Merner
collection DOAJ
description 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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spelling doaj.art-fa8b698db919458da6f3bfd02e749d142023-08-24T04:34:46ZengElsevierBrain Stimulation1935-861X2023-07-01164990998Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trialAmanda R. Merner0Kristin Kostick-Quenet1Tiffany A. Campbell2Michelle T. Pham3Clarissa E. Sanchez4Laura Torgerson5Jill Robinson6Stacey Pereira7Simon Outram8Barbara A. Koenig9Philip A. Starr10Aysegul Gunduz11Kelly D. Foote12Michael S. Okun13Wayne Goodman14Amy L. McGuire15Peter Zuk16Gabriel Lázaro-Muñoz17Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United StatesCenter for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United StatesCenter for Bioethics and Social Justice, Michigan State University, East Fee Hall, 965 Wilson Road Rm A-126, East Lansing, MI, 48824, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United StatesProgram in Bioethics, University of California, San Francisco, 490 Illinois Street, San Francisco, CA, 94143, United StatesProgram in Bioethics, University of California, San Francisco, 490 Illinois Street, San Francisco, CA, 94143, United StatesDepartment of Neurological Surgery, University of California, San Francisco, 400 Parnassus Avenue, San Francisco, CA, 94143, United StatesNorman 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 StatesNorman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United StatesNorman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United StatesDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine, 1977 Butler Blvd Suite E4.100, Houston, TX, 77030, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United StatesCenter for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United StatesCenter 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; Corresponding author. Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States.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.http://www.sciencedirect.com/science/article/pii/S1935861X23018004NeuroethicsNeurotechnologyEthicsDeep brain stimulationNeuromodulationPersonality
spellingShingle 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 Lázaro-Muñoz
Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial
Brain Stimulation
Neuroethics
Neurotechnology
Ethics
Deep brain stimulation
Neuromodulation
Personality
title Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial
title_full Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial
title_fullStr Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial
title_full_unstemmed Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial
title_short Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial
title_sort participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial
topic Neuroethics
Neurotechnology
Ethics
Deep brain stimulation
Neuromodulation
Personality
url http://www.sciencedirect.com/science/article/pii/S1935861X23018004
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