Information Needs of Patients Considering Epilepsy Surgery

Summary

The goal of this study is to find out what information people need when they are thinking about having epilepsy surgery. Experts say that all patients with drug-resistant epilepsy should think about surgery as a treatment. Surgery can lead to better health, but it is not used as often as it could be. One reason is that deciding to have brain surgery is complicated and can feel overwhelming.

To help with this, our team is doing something called World Café. These are small group discussions where people share their thoughts, experiences, and questions in a relaxed, welcoming setting. We will use these conversations to better understand what patients want to know when thinking about epilepsy surgery.

This study aims to answer the following research questions:

1. What are the information needs in considering surgery for epilepsy management?
2. What tools are needed in order to provide this information? (e.g. handouts, webinars, apps, online modules)
3. What is the best way to disseminate this information? (e.g. through epilepsy associations? In clinics?)

Eligibility

Currently recruiting participants: Yes

Eligible ages: 1 to 100

Accepts healthy participants: Yes

Inclusion criteria:

1. Belong to one of the following categories: patients with an epilepsy diagnosis, care partners for patients with an epilepsy diagnosis, epileptologists, or epilepsy surgeons.

2. Able to provide informed consent; if not (e.g. young children or person with moderate to severe intellectual disability) then a proxy will be required.

Exclusion criteria:

1. Participants of all ages can be included.
2. Caregivers of people with epilepsy (especially for those with severe intellectual disability or children who are too young to be competent)
2. Patients who are ineligible for epilepsy surgery

Participate

Fill out the following form if you want to participate in this research

Method of contact

UCalgary Notice of Collection
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Additional information

Contact information

Dr. Nathalie Jette, Professor of Neurology, University of Calgary

Principal investigator:

Nathalie Jette

Clinical trial:

No

REB-ID:

REB24-1194