Abstract
Background: Surgical resection is frequently the recommended treatment for drug-resistant temporal lobe epilepsy (TLE), yet many factors play a role in patients' perceptions of brain surgery that ultimately impact decision-making. The purpose of the current study was to explore how people with epilepsy, in their own words, experienced the overall process of consenting to surgery for drug-resistant TLE.Methods and Materials: Data was drawn from in-person, semi-structured interviews of 19 adults with drug-resistant TLE eligible to undergo epilepsy surgery. A systematic thematic analysis was performed to code, sort and compare participant responses. The mean age of these 12 (63%) women and seven (37%) men was 37.6 years (18–68 years), with average duration of epilepsy of 13 years (2–30 years).Results: Meeting the neurosurgeon and consenting to surgery represented an important treatment milestone across a prolonged treatment trajectory. Four themes were identified: (1) Understanding the language of risk; (2) Overcoming risk; (3) Family-centered, shared decision-making, and (4) Building decisional-confidence.Conclusion: Despite living with the restrictions of chronic uncontrolled seizures, considering an elective brain procedure raised unique and complex questions. Personal beliefs and expectations related to treatment outcomes influenced how the consent process was ultimately experienced. Decisions to pursue surgery had frequently been made ahead of meeting the surgeon, with many describing the act of signing as personally empowering. Overall, satisfaction was expressed with the information provided during the surgical visit, despite later inaccurate recall of the facts. These findings support the resultant recommendation that the practice of informed consent be conceptualized as a systematic, structured interdisciplinary process which occurs over time and encompasses three stages: preparation, signing and follow-up after signing.
Highlights
The advantages of epilepsy surgery for seizure control have been established by Class 1 evidence [1, 2]
We focus on the subgroup of 19 participants who had signed an informed consent to undergo a craniotomy and surgical resection of epileptogenic tissue
Study participants were adults seeking treatment for uncontrolled temporal lobe seizures at a leading, academic epilepsy center in the United States. Before they signed the informed consent, the first author, a clinical nurse specialist, invited eligible patients on the surgical waiting list to participate in a semi-structured interview about their understanding of treatment options including surgery
Summary
The advantages of epilepsy surgery for seizure control have been established by Class 1 evidence [1, 2]. Electing to under go an irreversible brain procedure represents a complex decisional process for both people with epilepsy (PWE) and clinicians, that includes weighing surgical risks against expectations for seizure freedom and a hopeful future [3]. How surgical risks are presented and understood have implications for approaches to providing information about surgery and signing (or not) an informed consent [12, 13]. Surgical resection is frequently the recommended treatment for drug-resistant temporal lobe epilepsy (TLE), yet many factors play a role in patients’ perceptions of brain surgery that impact decision-making. The purpose of the current study was to explore how people with epilepsy, in their own words, experienced the overall process of consenting to surgery for drug-resistant TLE
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