Background/ Why Is This Important?
A new generation of youth with chronic pediatric health conditions and disabilities (CHC/Ds) are surviving to adulthood, transferring from pediatric to adult healthcare systems of care.
In 2006/7 a total 790 youth transitioned from BC Children's Hospital to adult care. By 2011/12 this number had increased by 64% to 1,297 and by 2016 it is projected that there will be approximately 2,000 youth transferring annually to adult healthcare services. While the annual number of transferring patients is relatively small, their increasing longevity means there are now more adults than children with congenital heart disease and cystic fibrosis in BC.
The lack of transition planning and preparation, ad hoc system for transfer, the challenges of youth-appropriate care and lack of familiarity with their conditions has created a gap in continuity of care can lead to:
- Measurable adverse outcomes including increased mortality, morbidity, and poor long-term prognosis and quality of life;
- Increased risk factors including a decline or cessation of medical care leading to secondary disease or illness;
- Inappropriate use of emergency service and expensive use of the adult health care system1
"The goals of an organized, coordinated transition to adult care for young people with chronic conditions are: to optimize health and to facilitate each young person's attaining his or her maximum potential."2
What Actions Have Already Been Taken?
Where did this work start? Youth Transition initiatives, which began in 2011, is a provincial initiative designed to improve the transition of youth with chronic health conditions and disabilities (CHC/Ds) as they age out of pediatric care and transfer to the adult care system. One of the initiatives, ON TRAC (Transitioning Responsibly to Adult Care), was created to support comprehensive, continuous, accessible and developmentally-appropriate care to youth and young adult (ages 12-24 years) with chronic health conditions and/or disabilities as they plan, prepare and transfer from pediatric care to the adult health care system. ON TRAC developed tools and resources that support patients, families and providers to plan, prepare and transfer from pediatric care to adult health care services: http://www.bcchildrens.ca/our-services/support-services/transition-to-adult-care
Where Are We Now?
Youth Transition initiatives are currently focusing on 3 key areas:
- Supporting Staff: Clinical Practice Guidelines (CPGs), Education/Training — Evidence based clinical practice guidelines and clinical tools have been created to facilitate a comprehensive transition for youth with CHBC/Ds. Clinical tools are currently being implemented in several specialty clinics in BCCH.
- Preparing Youth and Families: Engagement and Support — Through youth and family engagement youth-driven and family-friendly health promotion materials and tools have been developed. Strategies and programming to improve health literacy, self-management and advocacy skills are available through peer lead youth readiness workshops and the ontracbc.ca website.
- Improving the System of Care — Community family physicians and adult specialists are essential for the ongoing, comprehensive care of youth with CHBC/Ds. The ON TRAC team has partnered with the Doctors of BC to undertake two projects:
- Developing a standardized Medical Transfer Summary (MTS) which supports transfer of medical care and improves attachment to adult specialists;
- Developing condition specific Transition Care Management Plans (TCMPs) that specify requirements for patient management, clarify roles and responsibilities of specialists and primary care providers, and define referral pathways from pediatric to adult care.
The Youth Transition initiatives are designed to effect changes in policy, clinical practice, and health system performance in order to improve outcomes for youth and the experience of providers, and to reduce overall health system costs. Youth Transition initiatives consist of separately funded projects with significant intersecting themes: engaging patients and families/caregivers; engaging health care providers and other stakeholders; understanding complex health care needs and required support; ensuring timely access to health care information; recognizing patient populations and their needs; and integrating cross-jurisdictional care.
Child Health BC is providing leadership for a provincial approach for youth transitioning to adult services. This work will inform health system decision-making related to the development of policy, programs and services aimed at improving the lives of youth who are transitioning to adult care in BC.
- Clinical Practice Guidelines 2014
- Suris, JC & Akre, C. Key elements for, and indicators of, a successful transition: an international Delphi study. Journal of Adolescent Health. 56(2015) 612-618