READYorNot™ Brain-Based Disabilities Project

Looking back:
our work in CHILD-BRIGHT Phase 1

To help youth with brain-based disabilities (BBD) such as autism spectrum disorder, cerebral palsy, epilepsy, fetal alcohol spectrum disorder and spina bifida, prepare for the transition from pediatric to adult health care, our team co-created the MyREADY Transition™ BBD App with patients, families, health care partners, and industry partners.  

In 2021-22, we completed recruitment of 46 participants in Alberta, Ontario, and the Maritimes for our randomized controlled trial (RCT). We actively worked with sites in Quebec to facilitate recruitment start-up in that province. We worked with QUOI Media, recruitment sites, and our Patient and Family Advisory Council (PFAC) to recruit participants and leveraged relationships with other organizations (like CanChild and the Children’s Healthcare Canada Transition Hub), front line service providers, colleagues, and personal networks to promote the study.  

Even as we continue to collect data, we are proud of all we have accomplished to date. Our study has responded to the needs of families as well as the need for systematically well-designed research approaches to co-create evidence-based eHealth transition tools. Despite the many ways the pandemic impacted our project, our research team maintained strong connections and continued our commitment to true collaboration with our patient and family partners.  

Together with our partners, we co-presented experiences preparing and conducting the RCT by publishing our research protocol and by giving presentations, presenting posters, and delivering webinars about our collaboration. Our team also co-developed print, electronic, and video resources to improve the overall experiences of participants, to offer support and guidance for using the App, and to prepare research staff for conducting study visits. 

An eye to the future: what Phase 2 has in store for us

We continue to move our CHILD-BRIGHT Phase 1 project forward and expect to have results analyzed late in 2022. Collaborative interpretation discussions involving our PFAC, RCT and Core teams are also planned for early 2023, at which point we will make decisions about the next steps for our project. We are also excited to share our App IT and content development processes; we have several articles in development on these topics. Our CHILD-BRIGHT Phase 1 results will focus on sharing our learning related to setting up a multi-site patient-oriented research trial, co-creating an App with patients and families, the feasibility of recruiting and conducting a trial virtually, as well as some information about experiences and benefits of using the App.   

Health care systems across the globe quickly pivoted to offering virtual care when in-person clinical appointments were restricted. Since we began in 2016, global awareness of the significant role for eHealth has grown exponentially, such that the need for eHealth interventions in health care transition remains prevalent across Canada. We are learning from trial participants about how the App content can best serve families as a resource in the future. National Transition Guidelines were created in 2017 but have not been widely implemented. Our work can help particularly with the recommendation for assessment of transition readiness and tailored interventions to foster skills and knowledge.