TSC Matters

Transition of Epilepsy Care Questionnaire

Open to adults or caregivers of a child or dependent adult with TSC and seizures.

Transition of Epilepsy Care from Pediatric to Adult” questionnaire being led by Dr. Danielle Andrade, Chair of the International League Against Epilepsy (ILAE) Task Force.

Overall 50% of patients who start having seizures during childhood will continue to have seizures as adults. TRANSITION is the planned process of moving patients with childhood-onset epilepsy to the adult care. Transition usually starts several years before the patient becomes adult and ends when the patient stops seeing the child neurologist is seen only by the adult neurologist. We would like to know what is/was your experience with transitioning. Even if you did not have a planned transition and was simply referred to an adult neurologist, we would like to know how was your experience moving from the pediatric to the adult health care system. Please take a moment to answer the questionnaire below. Choose which questionnaire to answer based on your age. Caregivers of patients who cannot answer the questions (those with motor or intellectual disabilities) are invited to answer the questionnaire on behalf of the patient. Thank you for your participation. If you have questions about the questionnaire or about transition, please send us an email at: epilepsytwh@gmail.com

Transition questionnaire for patients 12 to 18 years old: https://docs.google.com/forms/d/1MDPWzADLd3TfvFBbwfhsUN8CBRKI77p4wjW1UACL2GM/viewform?edit_requested=true

Post-Transition questionnaire for patients older than 18 years: https://docs.google.com/forms/d/1gAuwecVAN3fKRtPbbFvadBnNzSkLYlyFquUdu1FNWKs/viewform?edit_requested=true