READYorNot Transition Project (READiness in Youth fOR traNsition Out of pediaTric Care)

The READYorNot Transition project is one of the CHILD-BRIGHT network of projects under the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) initiative. In this project, researchers, healthcare professionals, technology designers, youth and families are working together to create the MyREADY Transition App.

MyREADY Transition App is designed for young people between 15 and 17 years old who are in pediatric health care and one day will be entering adult health care. It is designed for people with cerebral palsy, spina bifida, epilepsy, autism, or fetal alcohol syndrome who are beginning to take charge of managing their own health care. Users have their own personal mentor to help them journey through the App’s city landscape. By visiting different places in the city, watching videos, and completing challenges, MyREADY Transition App makes it fun to learn and practice managing medical information and other skills to help users get ready for adult health care. 

The second phase of the READYorNot Transition Project will involve recruitment of youth in Alberta, Ontario, Quebec and the Maritimes for a randomized control trial (RCT). The primary goal of the RCT is to determine whether the group who use the MyREADY Transition App will have improved transition readiness (specifically improved self-management and self-advocacy skills) compared to youth who receive usual care. Secondary objectives include learning about users' experiences to help to optimize and further develop the MyREADY Transition App.


Objectives

In collaboration with parent and youth partners and other stakeholders, we are creating an e-health application called MyREADY Transition App for people between 15 and 17 years of age with autism spectrum disorder, cerebral palsy, epilepsy, spina bifida, fetal alcohol syndrome. We want to see if the MyREADY Transition App will help youth as they are preparing for transfer into adult health care services. And, we want to see if it will help them to be more prepared to manage their own health and to advocate for themselves. The aim is to see youth taking steps to share the management of their health. For example, that youth know about their condition and themselves and know when to ask for help from parents and health care providers.


READYorNot Project Team

Co-Principal Investigators:             

Dr. Jan Willem Gorter – McMaster University, McMaster Children’s Hospital, Hamilton

Dr. Ariane Marelli – McGill University & McGill University Health Centre, Montreal

Dr. Khush Amaria – Hospital for Sick Children (SickKids), Toronto

Co-Investigators:                       

Dr. Shelley Doucet – University of New Brunswick, Saint John

Dr. Maryam Oskoui – McGill University & Montreal Children's Hospital, McGill University Health Centre, Montreal

Dr. John Andersen – University of Alberta, Glenrose Rehabilitation Hospital, Edmonton

Dr. Janet Rennick – McGill University & Montreal Children's Hospital, McGill University Health Centre, Montreal

Dr. Andrew Mackie – University of Alberta, Stollery Children's Hospital, Edmonton

Dr. Lehana Thabane – McMaster University, Hamilton

Dr. Anne Fournier – CHU Mère-Enfant, Sainte Justine Hospital, Montreal

Dr. Lonnie Zwaigenbaum – University of Alberta, Glenrose Rehabilitation Hospital, Edmonton

Dr. Ronen Rozenblum – Brigham and Women’s Hospital and Harvard Medical School, Boston

Dr. Adrienne Kovacs – Oregon Health & Science University, Portland

Patient Family Advisory Committee (PFAC):

Donna Thomson, Parent/Family Advisor

Roger Stoddard, Parent/Family Advisor

JoAnne Mosel, Parent/Family Advisor

Crystal Chin, Young Adult/Patient Advisor

Julia Hanes, Young Adult/Patient Advisor

Kyle Chambers, Young Adult/Patient Advisor

Jessica Havens, Young Adult/Patient Advisor

Project Staff:

MyREADY Design & Development Project Manager: Alicia Via-Dufresne Ley, McGill University

Qualitative/Stakeholder Engagement Research Coordinator: Sonya Strohm, McMaster University

RCT Research Coordinator: Barb Galuppi, McMaster University

Trainees:

Ciara Briscoe, PhD Candidate, Clinical Psychology, Concordia University (Supervisor: Dr. Amaria)

Linda Nguyen, PhD Candidate, Rehabilitation Science, McMaster University (Supervisor: Dr. Gorter)

Sharon Hou, PhD Candidate, Clinical Psychology, University of Guelph (Supervisor: Dr. Amaria)


Sponsors

The READYorNot Project is funded by the CHILD-BRIGHT Network, under the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) initiative, and with partner support from Montreal Children's Hospital Foundation, McMaster University Faculty of Health Sciences, Hamilton Hospital Foundation, McMaster Children’s Hospital, and New Brunswick Health Research Foundation. 


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