Information needs of patients considering epilepsy surgery: A scoping review

Epilepsy surgery is a recommended treatment for individuals with drug-resistant epilepsy. However, patients often face significant challenges in decision-making due to a lack of accessible and high-quality information.

We conducted a scoping review to identify the information needs of people considering surgery for epilepsy. Nine databases were searched between 1990 and 2025 to identify research relevant to this review. We included studies that described the information needs of people considering epilepsy surgery and that evaluated available resources to support this decision. Abstract screening, full text review, and data charting were done in duplicate. Risk of bias assessment was completed by one reviewer.

We identified 2949 studies, of which 18 were included, addressing the following topics: patient informational needs (n = 12), resources designed to support patients through epilepsy surgery decision-making (n = 5), and resource readability (n = 2). Themes of information needs included discussion of risks and benefits, personalized prognosis, medical assessments needed to determine eligibility, and procedure-specific outcomes. Six studies identified the importance of involving epilepsy specialists in information sharing, and six highlighted the importance of patient testimonials. Multiple studies suggested current resources lack clarity and consistency, and two identified average readability of available resources to be at or above grade 12 level. Five studies evaluated resources including a mixed reality education tool, a caregiver intensive information program, use of a decision coach, and a patient information program. Providing patient-centered information can reduce anxiety/depression and increase quality of life for patients and caregivers.

This review highlights critical gaps in the quality and accessibility of information for individuals considering epilepsy surgery. Patient testimonials emerged as a powerful tool in supporting informed decision-making. Future efforts should focus on developing culturally responsive, readable, and patient-centered resources tailored to diverse epilepsy populations.