Background and Aims Deep brain stimulation (DBS) has shown promise as a treatment option for substance use disorders (SUDs), but may have unique ethical risks due to stigma and other factors. Previous studies have elicited researcher and clinician opinions on those risks, but none have studied perspectives of people living with SUDs.
Methods Participants were recruited through a national inpatient treatment network employing purposive sampling for representation of minoritized groups and diversity of substances. Participants viewed a short video introducing DBS, followed by a 1.5 hour semi-structured interview on their experiences with SUDs and their perspectives on DBS as a future treatment option. Interviews were analyzed by multiple coders who iteratively identified salient themes.
Results We interviewed 20 people in 12-step based, inpatient treatment programs (10 [50%] white/Caucasian, 7 Black/African American [35%], 2 Asian [10%], 1 Hispanic/Latino [5%], and 1 [5%] Alaska Native/American Indian; 11 [45%] women). Interviewees described a variety of barriers they currently faced through the course of their disease that mirrored barriers often associated with DBS (stigma, invasiveness, maintenance burdens, privacy risks). The majority of respondents expressed interest in DBS as a future treatment option, emphasizing the importance of exploring novel treatment options and keeping individual treatment goals as key guiding considerations.
Conclusions The perspectives of people with lived experience of SUDs contrasted with previous surveys of provider attitudes on DBS for SUDs. Individuals with SUDs gave relatively less weight to surgical risks and clinical burdens associated with DBS. These differences derived largely from their experiences living with an often-fatal disease, encountering limitations of current treatment options, and their familiarity with 12-step treatment paradigms that prioritize having multiple therapeutic “tools.” These findings support the study of DBS as a treatment option for SUDs, with extensive input from people with SUDs and advocates.
Competing Interest StatementASW receives research device donations from Medtronic, which manufacturers deep brain stimulation systems. He receives consulting income from Dandelion Science. He holds multiple granted and pending patents in the general area of deep brain stimulation for psychiatric and substance use disorders, none of which are commercially licensed.
Funding StatementThis study was funded by NIH P30DA048742 (MJT), R21DA052568 (ASW, MJT), 1RF1MH117800-01 (SG, EK, EV). Additional funding provided by MnDRIVE Brain Conditions Initiative and University of Minnesota Medical Discovery Team on Addiction.
Author DeclarationsI confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.
Yes
The details of the IRB/oversight body that provided approval or exemption for the research described are given below:
Study approved by University of Washington IRB (STUDY00009975).
I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.
Yes
I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).
Yes
I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable.
Yes
FootnotesDECLARATION OF COMPETING INTEREST: ASW receives research device donations from Medtronic, which manufacturers deep brain stimulation systems. He receives consulting income from Dandelion Science. He holds multiple granted and pending patents in the general area of deep brain stimulation for psychiatric and substance use disorders, none of which are commercially licensed.
PRIMARY FUNDING: P30DA048742 (MJT), R21DA052568 (ASW, MJT), MnDRIVE Brain Conditions Initiative, and University of Minnesota Medical Discovery Team on Addiction; also NIH 1RF1MH117800-01 (SG, EK, EV)
Data AvailabilityData produced in the present study available upon reasonable request to the authors.
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