Transition to Adulthood Study at University of Toronto and Transition to Adulthood Resources
Transitioning to an adult is hard enough for anyone let alone our special STXBP1 disorders children. We have been assembling resources on this subject and even ran a session on it during our Summit +.
I participated in a 3rd party study from the University of Toronto on behalf of my Katie who is 18. We’re in the middle of this big transition now so it was very timely for us. Here’s a link to the study invitation with some additional details below. If this is relevant to your family now too hopefully you can join in the study.
International League Against Epilepsy (ILAE) Taskforce on Transition
Transition in Epilepsy – A survey for patients and healthcare practitioners (HCP)
About the study
Transition from pediatric to Adult Healthcare System proves difficult for many youths with epilepsy and their families. There are significant difficulties in establishing and maintaining transition programs in epilepsy. Poorly organized transition programs in epilepsy may be associated with poor seizure control, undiagnosed comorbid conditions, along with poor psychosocial outcomes. A successful transition involves engagement and participation of the entire medical team, including physicians, nurses, nurse practitioners, social workers, the family, and any other caregivers, and most importantly the young person collaborating in a positive and mutually respectful relationship.
The purpose of the study is to understand the patient/caregiver and healthcare professional’s perspective of transition in epilepsy and the barriers experienced.
Patient questionnaire
If you or a family member has epilepsy, you may be eligible to participate. The study involves filling a questionnaire, and only 20-25 minutes of your time.
Pt - English | Pt – Portuguese | Pt – Spanish | Pt – Romanian | Pt - Chinese
Quratulain Zulfiqar Ali, MD (she/her)
Research Associate l Epilepsy Genetics Research Program | UHN | Toronto Western Hospital
Ph: 416-603-5800 (x5906)
- Russ Novy
