The International League Against Epilepsy (ILAE) Taskforce on Transition is looking for patients/caregivers of patients with epilepsy who are 12 years or older to complete a survey study.
The 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 programshttps://www.ilae.org/news-and-media/news-about-ilae/transition-in-epilepsy-a-survey-for-patients-and-healthcare-practitioners 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. You can watch a brief Video from Dr. Andrade explaining the study. Feel free to circulate this within your circles.
HCP questionnaire
If you are a health care provider that cares for patients with epilepsy, you may be eligible to participate. The study involves filling a questionnaire, and only 15-20 minutes of your time.
HCP – English | HCP – French | HCP – Portuguese | HCP – Spanish | HCP – Romanian | HCP – Chinese | HCP – Japanese
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
You can email quratulain.zulfiqar_ali@uhn.ca if you have any questions and are interested in learning more.
