1. Patient experiences of resection versus responsive neurostimulation for drug-resistant epilepsy.
- Author
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Haeusermann, Tobias, Liu, Emily Yang, Fong, Kristina Celeste, Dohan, Daniel, and Chiong, Winston
- Subjects
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PATIENTS' attitudes , *PATIENT experience , *CAREGIVER attitudes , *NEURAL stimulation , *VAGUS nerve , *TEMPORAL lobectomy , *EPILEPSY , *PEOPLE with epilepsy - Abstract
• Patients undergoing resection versus RNS report a common experience of circuitous treatment paths. • Resection patients emphasized the risk of loss of core traits and functions but also the prospect of a definitive cure. • RNS patients emphasized the reversibility of implantation but perceived the procedure as primarily palliative. • These insights into patient perspectives may help identify areas of targeted exploration and counseling by clinicians. This study explored illness experiences and decision-making among patients with epilepsy who underwent two different types of surgical interventions: resection versus implantation of the NeuroPace Responsive Neurostimulation System (RNS). We recruited 31 participants from a level four epilepsy center in an academic medical institution. We observed 22 patient clinic visits (resection: n = 10, RNS: n = 12) and conducted 18 in-depth patient interviews (resection: n = seven, RNS: n = 11); most visits and interviews included patient caregivers. Using an applied ethnographic approach, we identified three major themes in the experiences of resection versus RNS patients. First, for patients in both cohorts, the therapeutic journey was circuitous in ways that defied standardized first-, second-, and third- line of care models. Second, in conceptualizing risk, resection patients emphasized the permanent loss of "taking out" brain tissue whereas RNS patients highlighted the reversibility of "putting in" a device. Lastly, in considering benefit, resection patients perceived their surgery as potentially curative while RNS patients understood implantation as primarily palliative with possible additional diagnostic benefit from chronic electrocorticography. Insight into the perspectives of patients and caregivers may help identify key topics for counseling and exploration by clinicians. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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