‘Woe Betides Anybody Who Tries to Turn me Down.’ A Qualitative Analysis of Neuropsychiatric Symptoms Following Subthalamic Deep Brain Stimulation for Parkinson’s Disease

Abstract

Deep brain stimulation (DBS) of the subthalamic nucleus (STN) for the treatment of Parkinson's disease (PD) can lead to the development of neuropsychiatric symptoms. These can include harmful changes in mood and behaviour that alienate family members and raise ethical questions about personal responsibility for actions committed under stimulation-dependent mental states. Qualitative interviews were conducted with twenty participants (ten PD patient-caregiver dyads) following subthalamic DBS at a movement disorders centre, in order to explore the meaning and significance of stimulationrelated neuropsychiatric symptoms amongst a purposive sample of persons with PD and their spousal caregivers. Neuroethics

“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

“…These changes did not result in the patient feeling they were now an entirely different person, but were incorporated into their self-concept. In another qualitative study, patients with PD reported no change in identity after STN-DBS, despite experiencing significant neuropsychiatric symptoms (Mosley et al, 2019). Once recovered, these radical changes appeared integrated into patients’ autobiographical narrative.…”

“…Mixed experiences have been reported in other samples. In their sample of STN-DBS patients, Mosley et al (2019) described variable perceptions of control in relation to significant neuropsychiatric symptoms patients experienced (e.g., ICDs, irritability, aggression, dangerous driving). Some felt a loss of autonomy, due to their actions being out of keeping with their usual behavior and values.…”

“…This does not preclude DBS from potential long-term effects. Even after amelioration through stimulation reprogramming, a patient’s uncharacteristic and problematic behavior can have lasting repercussions for the caregiver and spousal relationship (Mosley et al, 2019). Our results reflect how disappointment with the procedure outcome and stimulation-related side-effects (e.g., speech, balance issues) can have an indirect lasting effect, particularly on mood and self-confidence.…”

“…Conversely, those without existing ICDs or psychiatric history were confident they would go unchanged by DBS. Although statistically at a reduced risk, cases of de novo ICDs and behavioral changes have been reported in patients with no history, so should not be discounted as a potential outcome (Mosley et al, 2019; Voon et al, 2006).…”

Sex Disparities in the Self-Evaluation of Subthalamic Deep Brain Stimulation Effects on Mood and Personality in Parkinson's Disease Patients

“…Other serious confounding factors are the locations of the active lead contacts and the DBS programming skills of clinic personnel. In fact, depending on active contact location and the stimulated structures, there can be serious adverse neuropsychiatric consequences that can only be partially compensated by skilled therapists ( 73 , 91 ). At our institution, a task force of a few neurologists and clinical personnel is specifically trained for and dedicated to DBS therapy.…”