Dr. Danielle Andrade recognized rares/severe epilepsies need unique transitions from child to adult care. The ILAE Task Force is administering questionnaires to MDs and patients/caregivers to understand transition from childhood to adult as well as adults who have already transitioned.
Survey is open to families of patients ages 12 to 18 as well as adult patients ages 18 and up. Your participation in this survey will help create a toolkit for families with severe epilepsies.
We would like to invite you to participate in our research study “Perception of transition from pediatric to adult healthcare system in patients with epilepsy” headed by Dr. Danielle Andrade at the Toronto Western Hospital. Our goal is to better understand your views and opinions regarding the process of transition of care from child to adult care.
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 are an adult still being followed by your pediatric neurologist or if you did not have a planned transition and was simply referred to an adult neurologist, we would like to know how was your transition experience.
The results of this study will help us identify and understand the difficulties experienced by the patients with epilepsy and their families around the process of transition. It will also help identify issues around transition of care experienced by patients and families which can help with future guidelines and policies around transition of care in epilepsy.
Participation in this study is entirely voluntary.
If you want to hear more about the study please call at 416-603-5800, extension 5906, or email me at Quratulain.email@example.com
Quratulain Zulfiqar Ali, MD
Research Associate l
Epilepsy Genetics Research Program | UHN | Toronto Western Hospital
Ph: 416-603-5800 (x5906)