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Published on: August 11, 2015
Beyond symptom scales: Patient-centered insights into deep brain stimulation outcomes in treatment-refractory
Isabella J Sewell1, Rohina Kumar1, Alexander J Nyman1
1Hurvitz Brain Sciences Program, Sunnybrook Research Institute, Toronto, ON, Canada.
Background:
Deep brain stimulation (DBS) has emerged as a promising intervention for treatment-refractory psychiatric conditions, including post-traumatic stress disorder (PTSD). Treatment efficacy in PTSD is typically assessed with standardized clinical scales, such as the Clinician-Administered PTSD Scale for DSM-5 (CAPS-5). While these measures provide valuable quantitative insights, they may not fully capture the range of changes that are meaningful to patients. This study sought to evaluate outcomes following DBS in individuals with treatment-refractory PTSD, with a particular emphasis on subjective experiences and patient-defined improvements.
Methods:
Semi-structured interviews were conducted with four women who had undergone DBS for treatment-refractory PTSD, between 6- and 24-months post-implantation. The interviews were transcribed and summarized.
Results:
At the time of the interviews, two participants were classified as partial responders (30-49 % improvement on the CAPS-5 from baseline) and two as responders (≥50 % improvement). All patients reported meaningful improvements and considered the treatment a success, challenging the traditional definition of treatment efficacy. For example, one partial responder achieved her long-term goal of enrolling in nursing school, while another engaged in new social activities and rekindled her passion for playing the piano.
Conclusion:
Findings from this study underscore the importance of integrating patient-centered perspectives into the evaluation of DBS efficacy for treatment-refractory PTSD. Standardized scales remain essential but may overlook dimensions of improvement that patients view as meaningful. A more comprehensive framework that combines quantitative measures with qualitative, patient-defined outcomes may better capture the true impact of DBS in individuals with treatment-refractory psychiatric conditions.

