From insight to action: Enhancing youth transitions in healthcare

Katherine Bailey completed her Master of Science in 2023 through the Institute of Health Policy, Management and Evaluation at the University of Toronto, under the supervision of Dr. Alène Toulany, an Adolescent Medicine Physician and Researcher at The Hospital for Sick Children. She provides a summary of her research findings, which was supported by the Edwin S.H. Leong Centre for Healthy Children Studentship Award.

For my Master’s project, we conducted a systematic review of quality indicators for evaluating the transition from pediatric to adult care for youth with chronic conditions, published in Pediatrics. The transition is often challenging and can lead to negative health outcomes, such as increased emergency department visits, hospitalizations, and worsened health status. Of the 169 quality indicators we identified, none addressed health equity. To address this gap, we investigated whether previous studies examined the social and structural determinants of health and their impact on transition outcomes for youth. Collaborating with three young adults with lived experience, we developed a scoping review on this topic. Our findings revealed significant racial, ethnic, and gender disparities during the transition to adult care, which has important implications for healthcare providers and policy-makers. A second article presenting these findings was also published in Pediatrics.

In addition, we identified a lack of evidence-based recommendations for engaging youth with chronic conditions in health research. To address this, we conducted a narrative review on youth engagement strategies and assembled a team of 11 youth advisors from across Canada to provide insights. Our publication, “Benefits, Barriers and Recommendations for Youth Engagement in Health Research: Combining Evidence-Based and Youth Perspectives”, is now available in Research Involvement and Engagement. We also created a knowledge translation video, “Nothing For Youth, Without Youth”, which won First Place in the Canadian Institutes of Health Research Human Development, Child and Youth Health Video Competition. We hope this work serves as a resource for researchers looking to involve youth in their research and highlights the impact of meaningful engagement on youth themselves.

The findings from these projects have informed a new study led by Dr. Alène Toulany and our team, funded by the Canadian Institutes of Health Research and Physician Services Incorporated. This study will use consensus-building methods to prioritize the quality indicators identified in our initial systematic review and develop a set of indicators for evaluating the transition to adult care across chronic health conditions. This study will engage youth, parents, caregivers, clinicians, and health system leaders to capture multi-stakeholder priorities and perspectives. The study protocol  has been accepted for publication, and the study is now underway.  I am deeply grateful to the Edwin S.H. Leong Centre for Healthy Children for their support of this work. Our research has important implications for youth health, as well as youth engagement in health research, and I am grateful to the Centre for their continued support in my research journey!