“Nothing to Lose, Absolutely Everything to Gain”: Patient and Caregiver Expectations and Subjective Outcomes of Deep Brain Stimulation for Treatment-Resistant Depression

Abstract

Background: How “success” is defined in clinical trials of deep brain stimulation (DBS) for refractory psychiatric conditions has come into question. Standard quantitative psychopathology measures are unable to capture all changes experienced by patients and may not reflect subjective beliefs about the benefit derived. The decision to undergo DBS for treatment-resistant depression (TRD) is often made in the context of high desperation and hopelessness that can challenge the informed consent process. Partners and family can observe important changes in DBS patients and play a key role in the recovery process. Their perspectives, however, have not been investigated in research to-date. The aim of this study was to qualitatively examine patient and caregivers’ understanding of DBS for TRD, their expectations of life with DBS, and how these compare with actual experiences and outcomes.Methods: A prospective qualitative design was adopted. Semi-structured interviews were conducted with participants (six patients, five caregivers) before DBS-implantation and 9-months after stimulation initiation. All patients were enrolled in a clinical trial of DBS of the bed nucleus of the stria terminalis. Interviews were thematically analyzed with data saturation achieved at both timepoints.Results: Two primary themes identified were: (1) anticipated vs. actual outcomes, and (2) trial decision-making and knowledge. The decision to undergo DBS was driven by the intolerability of life with severe depression coupled with the exhaustion of all available treatment options. Participants had greater awareness of surgical risks compared with stimulation-related risks. With DBS, patients described cognitive, emotional, behavioral and physical experiences associated with the stimulation, some of which were unexpected. Participants felt life with DBS was like “a roller coaster ride”—with positive, yet unsustained, mood states experienced. Many were surprised by the lengthy process of establishing optimum stimulation settings and felt the intervention was still a “work in progress.”Conclusion: These findings support existing recommendations for iterative informed consent procedures in clinical trials involving long-term implantation of neurotechnology. These rich and descriptive findings hold value for researchers, clinicians, and individuals and families considering DBS. Narrative accounts capture patient and family needs and should routinely be collected to guide patient-centered approaches to DBS interventions.

Personal and relational changes following deep brain stimulation for treatment-resistant depression: A prospective qualitative study with patients and caregivers

“…Ethics approval was obtained from Monash University Human Research Ethics Committee (CF16/1888-2016000963) and all participants provided written informed consent. Separate data findings derived from these interviews on the topics of informed consent, participant expectations, and subjective patient outcomes are reported elsewhere [ 27 ].…”

Clinical recommendations for the care of people with treatment-refractory obsessive-compulsive disorder when undergoing deep brain stimulation

“…Unrealistic expectations can negatively impact satisfaction post-DBS and are correlated with poor psychosocial adjustment and functional outcomes (in Parkinson’s disease and epilepsy, no identified data in OCD) (Hasegawa et al, 2014; Maier et al, 2016). Furthermore, despite expressing realistic expectations, patients may hope for more (Thomson et al, 2021). Both family members and patients should not expect a cure, but be well informed of, and committed to, the post-operative regimen (as described below).…”

“…Studies in major depressive disorder (MDD) have demonstrated that DBS patients generally report realistic expectations of outcomes, but they also (retrospectively) identified difficulties with attending to, processing and retaining the educational material presented as part of the consent process (Thomson et al, 2021). In our experience with OCD, compulsions can interrupt consenting discussions, and repeated questioning suggests poor retention.…”

“…Previously, simple but effective educational tools (booklet, interactive app) for DBS have shown value in pre-operative decision-making, follow-up satisfaction and addressing unrealistic hopes (Dinkelbach et al, 2017; Yen et al, 2021). Information delivered by other DBS patients may have a stronger impact in preparing individuals for personally difficult experiences during recovery (Dinkelbach et al, 2017; Thomson et al, 2021).…”

Subject and Family Perspectives from the Central Thalamic Deep Brain Stimulation for Traumatic Brain Injury Study: Part I

“…Beyond altruism and a sense of purpose, the first of these subjects had hopes for a better life, "… there's so much I've suffered … I mean, I have not been able to work, I have not been able to do anything for 18 years." And with a sense of desperation, 57 "So it's more like might as well try it. I've lost everything" [P210].…”