Closed-Loop Neuromodulation and Self-Perception in Clinical Treatment of Refractory Epilepsy

Area of Science:

• Neuroscience
• Medical Ethics
• Sociology of Health

Background:

Purpose of the Study:

• To investigate patient and caregiver experiences with responsive neurostimulation (RNS), a closed-loop neuromodulation device.
• To assess whether RNS influences patient personality and self-perception, addressing theoretical neuroethical concerns.
• To understand how RNS impacts patients' conceptions of their illness and treatment journey.

Main Methods:

• Ethnographic research conducted at a single academic medical center.
• Direct observation of RNS clinic visits.
• In-depth interviews with 12 patients and their caregivers, followed by deductive and inductive analysis.

Main Results:

• Patients and caregivers generally did not attribute personality or self-perception changes to RNS.
• RNS significantly affected patients' experiences and understanding of their epilepsy.
• The device's data display created a shared reference frame and vocabulary between patients and clinicians.

Conclusions:

• Empirical data from RNS use do not support theoretical neuroethical concerns about personality alteration.
• Closed-loop neuromodulation, like RNS, can profoundly alter illness experiences.
• RNS provides new cultural tools and metaphors for understanding epilepsy, diagnosis, and treatment, highlighting the need to contextualize neuroethical concerns within patient experiences.