Preparing Youth for Adult Care
Inflammatory Bowel Disease (IBD) can be diagnosed at any age, but it is most commonly identified in adolescents and young adults.
In pediatric care, families are central, with parents making key decisions. As children enter their early teens, they are encouraged to take more responsibility for managing their condition.
The transition from pediatric to adult IBD care is a critical time for these young patients. They need well-coordinated care that addresses their medical needs, provides disease-specific education, and supports their emotional well-being.
A failed transition can result in increased emergency department visits, hospitalizations, surgeries, and poor adherence to care.
Supporting youth as they transition to adult IBD care is a pilot program with participation from three Canadian pediatric IBD centres, The Hospital for Sick Children in Toronto, British Columbia Children's Hospital in Vancouver and Children's Hospital of Eastern Ontario in Ottawa.
This piloted intervention supports adolescents and young adults by connecting them with a transition navigator who guides them through the transition from pediatric to adult IBD care and supports their individual needs. Participants also have access to resources that will build skills and improve their confidence, self-control, and coping strategies related to their health. Additionally, the program offers easy-to-understand educational resources covering important topics that help them in navigating challenges relevant to youth living with IBD.
Publications
Mental Health Experiences of Adolescents and Young Adults with Inflammatory Bowel Disease During Transition to Adult Care: A Qualitative Descriptive Study
Dr. Brooke Allemang and team explore the mental health experiences of adolescents and young adults with inflammatory bowel disease (IBD) during their transition to adult care.
Access the publication https://doi.org/10.1016/j.jpeds.2024.114123
Canadian Consensus Statements on the Transition of Adolescents and Young Adults with Inflammatory Bowel Disease from Pediatric to Adult Care: A Collaborative Initiative Between the Canadian IBD Transition Network and Crohn's and Colitis Canada
Dr. Nancy Fu and team established a set of recommendations for helping adolescents and young adults with Inflammatory Bowel Disease (IBD) transition to the adult healthcare system.
Access the publication https://doi.org/10.1093/jcag/gwab050
Paediatric to Adult Transition of Care in IBD: Understanding the Current Standard of Care Among Canadian Adult Academic Gastroenterologists
Dr. Natasha Bollegala and Dr. Geoffrey Nguyen completed a review of the current practices for transitioning youth to adult care in Canada.
Access the publication https://doi.org/10.1093/jcag/gwz023
History
In 2020, a needs assessment conducted by Crohn's and Colitis Canada identified a gap in support for adolescents and young adults living with IBD to successfully transition to the adult healthcare system.
In 2021, to address this gap in care, Dr. Eric Benchimol, Dr. Natasha Bollegala, and Dr. Melanie Barwick from the University of Toronto, along with Dr. Nancy Fu from the University of British Columbia, gathered a team of national and international experts. This team included pediatric and adult gastroenterologists, IBD nurses, patient partners, parents, caregivers and psychologists.
Together, they designed a pilot project in collaboration with Crohn’s and Colitis Canada to support adolescents and young adults as they move from pediatric to adult IBD care.
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Contact Information
To learn more about the PACE network, please contact research@crohnsandcolitis.ca.
The PACE network is supported by Crohn’s and Colitis Canada and our funding partners: