Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research
This research study provides patient and caregiver perspectives as to whether or not to undergo adaptive deep brain stimulation (aDBS) research. A total of 51 interviews were conducted in a multi-site study including patients undergoing aDBS and their respective caregivers along with persons declini...
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Format: | Article |
Language: | English |
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Frontiers Media S.A.
2021-10-01
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Series: | Frontiers in Neuroscience |
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Online Access: | https://www.frontiersin.org/articles/10.3389/fnins.2021.734182/full |
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Article |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Simon Outram Katrina A. Muñoz Kristin Kostick-Quenet Clarissa E. Sanchez Lavina Kalwani Richa Lavingia Laura Torgerson Demetrio Sierra-Mercado Demetrio Sierra-Mercado Jill O. Robinson Stacey Pereira Barbara A. Koenig Philip A. Starr Aysegul Gunduz Aysegul Gunduz Kelly D. Foote Michael S. Okun Wayne K. Goodman Amy L. McGuire Peter Zuk Gabriel Lázaro-Muñoz |
spellingShingle |
Simon Outram Katrina A. Muñoz Kristin Kostick-Quenet Clarissa E. Sanchez Lavina Kalwani Richa Lavingia Laura Torgerson Demetrio Sierra-Mercado Demetrio Sierra-Mercado Jill O. Robinson Stacey Pereira Barbara A. Koenig Philip A. Starr Aysegul Gunduz Aysegul Gunduz Kelly D. Foote Michael S. Okun Wayne K. Goodman Amy L. McGuire Peter Zuk Gabriel Lázaro-Muñoz Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research Frontiers in Neuroscience aDBS altruism decision-making interviews quality of life research |
author_facet |
Simon Outram Katrina A. Muñoz Kristin Kostick-Quenet Clarissa E. Sanchez Lavina Kalwani Richa Lavingia Laura Torgerson Demetrio Sierra-Mercado Demetrio Sierra-Mercado Jill O. Robinson Stacey Pereira Barbara A. Koenig Philip A. Starr Aysegul Gunduz Aysegul Gunduz Kelly D. Foote Michael S. Okun Wayne K. Goodman Amy L. McGuire Peter Zuk Gabriel Lázaro-Muñoz |
author_sort |
Simon Outram |
title |
Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research |
title_short |
Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research |
title_full |
Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research |
title_fullStr |
Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research |
title_full_unstemmed |
Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research |
title_sort |
patient, caregiver, and decliner perspectives on whether to enroll in adaptive deep brain stimulation research |
publisher |
Frontiers Media S.A. |
series |
Frontiers in Neuroscience |
issn |
1662-453X |
publishDate |
2021-10-01 |
description |
This research study provides patient and caregiver perspectives as to whether or not to undergo adaptive deep brain stimulation (aDBS) research. A total of 51 interviews were conducted in a multi-site study including patients undergoing aDBS and their respective caregivers along with persons declining aDBS. Reasons highlighted for undergoing aDBS included hopes for symptom alleviation, declining quality of life, desirability of being in research, and altruism. The primary reasons for not undergoing aDBS issues were practical rather than specific to aDBS technology, although some persons highlighted a desire to not be the first to trial the new technology. These themes are discussed in the context of “push” factors wherein any form of surgical intervention is preferable to none and “pull” factors wherein opportunities to contribute to science combine with hopes and/or expectations for the alleviation of symptoms. We highlight the significance of study design in decision making. aDBS is an innovative technology and not a completely new technology. Many participants expressed value in being part of research as an important consideration. We suggest that there are important implications when comparing patient perspectives vs. theoretical perspectives on the choice for or against aDBS. Additionally, it will be important how we communicate with patients especially in reference to the complexity of study design. Ultimately, this study reveals that there are benefits and potential risks when choosing a research study that involves implantation of a medical device. |
topic |
aDBS altruism decision-making interviews quality of life research |
url |
https://www.frontiersin.org/articles/10.3389/fnins.2021.734182/full |
work_keys_str_mv |
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doaj-0faba620c4a84b2dbd90e328965098162021-10-07T05:35:14ZengFrontiers Media S.A.Frontiers in Neuroscience1662-453X2021-10-011510.3389/fnins.2021.734182734182Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation ResearchSimon Outram0Katrina A. Muñoz1Kristin Kostick-Quenet2Clarissa E. Sanchez3Lavina Kalwani4Richa Lavingia5Laura Torgerson6Demetrio Sierra-Mercado7Demetrio Sierra-Mercado8Jill O. Robinson9Stacey Pereira10Barbara A. Koenig11Philip A. Starr12Aysegul Gunduz13Aysegul Gunduz14Kelly D. Foote15Michael S. Okun16Wayne K. Goodman17Amy L. McGuire18Peter Zuk19Gabriel Lázaro-Muñoz20Program in Bioethics, University of California, San Francisco, San Francisco, CA, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesBaylor College of Medicine, Houston, TX, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesDepartment of Anatomy and Neurobiology, School of Medicine, University of Puerto Rico, San Juan, Puerto RicoCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesProgram in Bioethics, University of California, San Francisco, San Francisco, CA, United StatesDepartment of Neurosurgery, University of California, San Francisco, San Francisco, CA, United StatesFixel Institute for Neurological Diseases, Program for Movement Disorders and Neurorestoration, Department of Neurology, University of Florida, Gainesville, FL, United StatesDepartment of Biomedical Engineering, University of Florida, Gainesville, FL, United StatesFixel Institute for Neurological Diseases, Program for Movement Disorders and Neurorestoration, Department of Neurology, University of Florida, Gainesville, FL, United StatesFixel Institute for Neurological Diseases, Program for Movement Disorders and Neurorestoration, Department of Neurology, University of Florida, Gainesville, FL, United StatesDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine, Houston, TX, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, United StatesThis research study provides patient and caregiver perspectives as to whether or not to undergo adaptive deep brain stimulation (aDBS) research. A total of 51 interviews were conducted in a multi-site study including patients undergoing aDBS and their respective caregivers along with persons declining aDBS. Reasons highlighted for undergoing aDBS included hopes for symptom alleviation, declining quality of life, desirability of being in research, and altruism. The primary reasons for not undergoing aDBS issues were practical rather than specific to aDBS technology, although some persons highlighted a desire to not be the first to trial the new technology. These themes are discussed in the context of “push” factors wherein any form of surgical intervention is preferable to none and “pull” factors wherein opportunities to contribute to science combine with hopes and/or expectations for the alleviation of symptoms. We highlight the significance of study design in decision making. aDBS is an innovative technology and not a completely new technology. Many participants expressed value in being part of research as an important consideration. We suggest that there are important implications when comparing patient perspectives vs. theoretical perspectives on the choice for or against aDBS. Additionally, it will be important how we communicate with patients especially in reference to the complexity of study design. Ultimately, this study reveals that there are benefits and potential risks when choosing a research study that involves implantation of a medical device.https://www.frontiersin.org/articles/10.3389/fnins.2021.734182/fullaDBSaltruismdecision-makinginterviewsquality of liferesearch |