Deep brain stimulation-related experiences for obsessive-compulsive disorder: In-depth interviews with operated patients and relatives

Abstract

Background

Deep brain stimulation (DBS) is an effective intervention for refractory obsessive-compulsive disorder (OCD). Although treatment success is measured by a decrease in the severity of core symptoms, this procedure can have broader psychological and physical effects. The field regrettably still lacks knowledge and tools allowing an adequate understanding and assessment of the full range of experiences that accompany DBS treatment. We aimed to describe possible side effects of DBS treatment as experienced by patients, beyond specific changes in OCD core symptoms.

Methods

We interviewed 16 patients and 7 of their relatives from two independent cohorts, receiving stimulation in different anatomical locations. We conducted semi-structured interviews, then transcribed at verbatim. Inductive content analysis was performed to code and group common themes.

Results

We categorized a variety of psychological and physical experiences. Patients frequently reported long-lasting changes often manifesting as improved mood and calmer behavior, but also as impaired memory, concentration, and sleep problems. Further, a wide range of individual experiences were described, suggesting that patients can feel and behave significantly different towards themselves and others, feeling more sensitive, more or less emotional, more impulsive, more irritable, more talkative.

Conclusions

We stress the importance of accumulating knowledge of the full range of DBS-related experiences, to improve shared decision making between patients and treating clinicians, and to facilitate comprehensive monitoring throughout the course of treatment.