READYorNot™ Brain-Based Disabilities Project

Contacts

Moving Ahead with Transition of Care from Adolescence to Adulthood: Youth with brain-based disabilities (BBD) require seamless transition from the pediatric to adult health care systems. This transition can be disruptive for youth and their families and have a negative impact on a patient’s health. In many pediatric centres, there are no dedicated resources for transition of care. With the READYorNot™ Brain-Based Disabilities Project, we are developing and evaluating e-health aids to help patients and families take charge of this transition. 

The CHILD-BRIGHT Network has provided a unique opportunity to develop and test an e-health intervention (app) to improve the transition of care journey.

What we have done so far:

• We developed the MyREADY Transition™ BBD App in collaboration with 360Medlink, patients and families.

• We directly engaged patients, their caregivers, and families as partners in research through a Patient and Family Advisory Council (PFAC) that has directly informed the design and testing of the intervention. Throughout the app development, we have also engaged patient, family and health care stakeholders as research participants in qualitative focus groups and interviews. We invite you to watch our video.

• We tested The MyREADY Transition™ BBD App intervention in a Randomized Controlled Trial (for details, see the protocol paper).

Research theme:
BRIGHT Futures: Projects that will redesign health care services to be more responsive to family needs

Age range: 
15–17 years

Start date:
April 2017

Principal Investigators: 
Dr. Ariane Marelli, McGill University Health Centre
Dr. Jan Willem Gorter, McMaster University

Co-Investigators:
Dr. Adrienne Kovacs, Equilibria Psychological Health, Toronto, Ontario, Canada
Dr. Khush Amaria, CBT Associates of Toronto (A CloudMD Company), Toronto, Ontario, Canada
Dr. Ronen Rozenblum, Brigham and Women’s Hospital and Harvard Medical School

2022-23 Project Update

We have exciting news: You can now view the Report to Participants & Families: Study Results!  

This comprehensive document summarizes the READYorNot research project, provides an overview of the results and key takeaways of the randomized controlled trial, and discusses the feedback we received from participating youth, parents, and care providers who used the MyREADY TransitionTM BBD App. 

On behalf of everyone on our research team, thank you to all those who participated! We’re grateful to have had the opportunity to learn from your experiences and insights.

2021-22 Project Update

Study recruitment is now closed!

We have closed study recruitment as of December 31, 2021. Thank you to study participants who joined the study across Ontario, Alberta, New Brunswick and Nova Scotia. If you have questions about the study, you can email the Randomized Controlled Trial Coordinator Barb Galuppi.

2019-20 Project Update

To help youth with brain-based disabilities (BBD) prepare for the transition from pediatric to adult health care, we developed the MyREADY TransitionTM BBD App in partnership with patients, families, health care stakeholders, and our industry partner 360Medlink.

We have collaborated closely with our Patient and Family Advisory Council (PFAC) since 2017. In 2019-20 we prepared a randomized controlled trial to see if there are benefits to using the app. The PFAC, which counts five young people among its members, was instrumental in helping the trial take shape. 

The PFAC:

• Shared testimonials about what this research means to them, which were featured in recruitment videos

• Partnered on the design and content of reference handouts

• Co-facilitated our consultation with the Alberta Child and Youth Advisory Council (CAYAC) about encouraging youth participation in research and explaining concepts like study design, randomization and control group in lay language

• Provided tips for social media recruitment and virtual study visits to enrich participant experience

• Co-developed a presentation for the 2020 CHILD-BRIGHT Virtual Symposium about engagement experiences.

Project News