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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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Autores principales: Outram, Simon, Muñoz, Katrina A., Kostick-Quenet, Kristin, Sanchez, Clarissa E., Kalwani, Lavina, Lavingia, Richa, Torgerson, Laura, Sierra-Mercado, Demetrio, Robinson, Jill O., Pereira, Stacey, Koenig, Barbara A., Starr, Philip A., Gunduz, Aysegul, Foote, Kelly D., Okun, Michael S., Goodman, Wayne K., McGuire, Amy L., Zuk, Peter, Lázaro-Muñoz, Gabriel
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8529029/
https://www.ncbi.nlm.nih.gov/pubmed/34690676
http://dx.doi.org/10.3389/fnins.2021.734182
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author Outram, Simon
Muñoz, Katrina A.
Kostick-Quenet, Kristin
Sanchez, Clarissa E.
Kalwani, Lavina
Lavingia, Richa
Torgerson, Laura
Sierra-Mercado, Demetrio
Robinson, Jill O.
Pereira, Stacey
Koenig, Barbara A.
Starr, Philip A.
Gunduz, Aysegul
Foote, Kelly D.
Okun, Michael S.
Goodman, Wayne K.
McGuire, Amy L.
Zuk, Peter
Lázaro-Muñoz, Gabriel
author_facet Outram, Simon
Muñoz, Katrina A.
Kostick-Quenet, Kristin
Sanchez, Clarissa E.
Kalwani, Lavina
Lavingia, Richa
Torgerson, Laura
Sierra-Mercado, Demetrio
Robinson, Jill O.
Pereira, Stacey
Koenig, Barbara A.
Starr, Philip A.
Gunduz, Aysegul
Foote, Kelly D.
Okun, Michael S.
Goodman, Wayne K.
McGuire, Amy L.
Zuk, Peter
Lázaro-Muñoz, Gabriel
author_sort Outram, Simon
collection PubMed
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.
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spelling pubmed-85290292021-10-22 Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research Outram, Simon Muñoz, Katrina A. Kostick-Quenet, Kristin Sanchez, Clarissa E. Kalwani, Lavina Lavingia, Richa Torgerson, Laura Sierra-Mercado, Demetrio Robinson, Jill O. Pereira, Stacey Koenig, Barbara A. Starr, Philip A. Gunduz, Aysegul Foote, Kelly D. Okun, Michael S. Goodman, Wayne K. McGuire, Amy L. Zuk, Peter Lázaro-Muñoz, Gabriel Front Neurosci Neuroscience 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. Frontiers Media S.A. 2021-10-07 /pmc/articles/PMC8529029/ /pubmed/34690676 http://dx.doi.org/10.3389/fnins.2021.734182 Text en Copyright © 2021 Outram, Muñoz, Kostick-Quenet, Sanchez, Kalwani, Lavingia, Torgerson, Sierra-Mercado, Robinson, Pereira, Koenig, Starr, Gunduz, Foote, Okun, Goodman, McGuire, Zuk and Lázaro-Muñoz. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Neuroscience
Outram, Simon
Muñoz, Katrina A.
Kostick-Quenet, Kristin
Sanchez, Clarissa E.
Kalwani, Lavina
Lavingia, Richa
Torgerson, Laura
Sierra-Mercado, Demetrio
Robinson, Jill O.
Pereira, Stacey
Koenig, Barbara A.
Starr, Philip A.
Gunduz, Aysegul
Foote, Kelly D.
Okun, Michael S.
Goodman, Wayne K.
McGuire, Amy L.
Zuk, Peter
Lázaro-Muñoz, Gabriel
Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research
title 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_short 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
topic Neuroscience
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8529029/
https://www.ncbi.nlm.nih.gov/pubmed/34690676
http://dx.doi.org/10.3389/fnins.2021.734182
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