Leong studentship recipient explores the literature on the transition to adult care
Katherine Bailey, a fourth year MD student at the University of Toronto Temerty Faculty of Medicine and Leong Centre Studentship Recipient, provides an update on her project titled: “Health Equity Considerations for Youth Transitioning from Paediatric to Adult Care: A Scoping Review.”
The Leong Centre Studentship Award has supported my master’s work through the Institute of Health Policy, Management and Evaluation at the University of Toronto. My master’s, under the supervision of Dr. Alène Toulany, Adolescent Medicine Physician at SickKids Hospital, has focused on identifying the social and structural determinants of health (SSDOH) impacting the transition from paediatric to adult healthcare services for youth with chronic health conditions. The transition to adult care is often very challenging for youth, particularly those with chronic illness, and has been shown to result in adverse health outcomes, including increased emergency department visits and hospitalizations, worsened health status, and many losing their connection with healthcare services altogether. These challenges are likely exacerbated for those experiencing social and structural vulnerabilities who often face additional barriers to engage with health care services.
We conducted a scoping review to identify existing studies that have looked at the relationship between SSDOH and transition outcomes to explore the current status of the literature and determine where gaps remain. We collaborated with three young adults with lived experience throughout the review process to identify meaningful research questions, methodological approaches, and interpret the results in the context of their own experiences. Our findings suggest significant racial, ethnic, and gender disparities in health outcomes during the transition to adult care, which have important implications for determining equitable transition policies such as developing individualized transition interventions and informing equity-focused quality improvement initiatives. The publication of our findings is forthcoming in Pediatrics.
As part of this scoping review, we looked to the literature to determine best practices for engaging youth in health research to inform our own engagement of young adult advisors in the scoping review. We noticed a lack of literature that identified strategies to engage youth in a meaningful and collaborative way. To help fill this gap, we conducted a second review of barriers and recommendations for youth engagement in health research. Most notably, we found a lack of studies engaging with youth with chronic health conditions. We then collaborated with eleven youths across Canada to bring crucial perspectives and voices to the synthesis of our findings. The youth advisors are currently producing a video to disseminate our findings on social media. This collaborative synthesis is under review for publication.
We plan on using findings from both reviews to help inform a new study focused on developing equitable quality indicators to evaluate transition to adult care. This involves consensus-building methods using the crucial perspectives of youth, their caregivers, and other knowledge users. We would like to thank the Edwin S.H. Leong Centre for Healthy Children for their support with this important work!
