Grant: Project Grant

Youth with rheumatic disease have long-term health challenges into adulthood. As they transition through adulthood, they are at higher risk for worsening symptoms, increased hospitalizations, fewer education/work opportunities, and even death. The transition to adult healthcare around age 18 occurs when youth are also maturing and experiencing rapid change in their bodies, friendships, relationships and schooling. The need for education, skill-building and support for youth during the transition to adult care is needed to help them understand the differences between pediatric and adult care and to build their confidence in being able to independently care for themselves. Having successfully completed a pilot study, we now propose a large multicentred trial to understand the impact of a Transition Coach program on youth with chronic rheumatic diseases. Youth 16-18 years old from 4 sites in Canada will be invited to participate in the study. Those who choose to participate will be assigned, by chance, to receive Transition Coaching and the Transition Toolkit, or just the Toolkit. Youth in the Coaching group will engage with a Transition Coach in 8 monthly one-on-one virtual sessions. Youth can schedule these sessions at a time that works for them, with each session taking up to 1-hour. During these coaching sessions, youth will be able to discuss all aspects of physical, mental and social well-being in the context of managing their disease. The Toolkit will be used to guide these discussions. Before and after the coaching program, we will give all study participants questionnaires to measure youth's confidence and their ability to manage their physical, social and mental health to understand how helpful the coaching program is. Long-term, this research will demonstrate the benefit of a virtual Transition Coach program that can be implemented in rheumatology programs across Canada.