READYorNot[TM] Brain-Based Disabilities Trial
Autism Spectrum Disorder, Cerebral Palsy, Epilepsy
About this trial
This is an interventional health services research trial for Autism Spectrum Disorder focused on measuring Health Care Transition, Brain-Based Disabilities, CHILD-BRIGHT, e-health application, randomized controlled trial
Eligibility Criteria
Inclusion Criteria:
- Youth with chronological age between 15 and 17 years of age (i.e. before 18th birthday), in one of the four Canadian study regions (Alberta, Ontario, Quebec, Maritimes), followed in pediatric care and for whom a discharge from pediatric care is planned but not for at least 6 months.
- A diagnosis of one of the following neurological brain-based disabilities: autism spectrum disorder, cerebral palsy, epilepsy, spina bifida, or fetal alcohol spectrum disorder.
- Cognitive ability to provide informed consent and the ability to read and understand English or French.
- Access to internet and a smartphone, iPad/tablet or desktop computer.
- TRANSITION-Q score >40 (as a screen to define a minimum threshold for transition readiness based on earlier work).
Exclusion Criteria:
- Youth is in "acute crisis" with unstable physical or mental health that would interfere with the ability to participate in the study.
- Sensory impairments, such as uncorrected vision or hearing loss, which interfere with use of the App intervention.
- Enrolled in a potentially confounding trial (e.g., a different transition intervention study).
Sites / Locations
- Alberta Health Services and The Governors of the University of Alberta
- Horizon Health Network
- Izaak Walton Killam Health Centre (IWK)
- McMaster Children's Hospital, Hamilton Health Sciences
- Lawson Health Research Institute
- Children's Hospital of Eastern Ontario Research Institute Inc.
- Holland Bloorview Kids Rehabilitation Hospital
- Centre Hospitalier Universitaire Sainte-Justine
- Research Institute of the McGill University Health Centre
Arms of the Study
Arm 1
Arm 2
Experimental
No Intervention
Usual Care + MyREADYTransition[TM] BBD App
Control Group: Usual Care
Participants in the experimental Intervention group continue to get the same care they have been getting (their usual care) and they receive the MyREADY Transition[TM] BBD App e-health application. There are 19 parts in the App with videos and games to help youth learn and practice ways to manage their health. There are approximately 5-7 hours of content in total. Participants will be asked to wait at least one day between the parts. There is a timer in the App to help to moderate pace and align with how young people learn and digest information. Participants can choose how much time they want to take to do the App. It is recommended that participants make their own routine for using it. The recommended shortest and longest intervention exposure times are: 1 part each day (this will take 19 days to do all of the App), 1 part each week (this will take 19 weeks to do all of the App).
Participants in the no intervention Control group continue to get the same care they have been getting (their usual care). The researchers aim to supply the App to participants in both the intervention and control group for a limited time after participation in the study.