On Wednesday, April 27, 2022, in partnership with the Provincial Council for Maternal and Child Health (PCMCH), Ontario Health hosted a webinar on the new Transitions From Youth to Adult Health Care Services quality standard entitled “Changing the Story: Improving Transitions from Youth to Adult Health Care.”
Geared toward those involved in the delivery of care to young people who will transition out of youth-oriented health care services and into adult health care services (including health care providers, managers, administrative leaders, and young people and their parents and caregivers), the webinar featured the following speakers:
- Sanober Diaz, MSc., Executive Director of PCMCH
- Kristin Cleverley, RN, PhD, Assistant Professor, Professor, Faculty of Nursing and Medicine, University of Toronto and Senior Scientist, Centre for Addiction and Mental Health
- Alene Toulany, MD, Staff Physician and Researcher, Hospital for Sick Children, University of Toronto
- Sterling Renzoni, Lived Experience Advisor, second-year chemistry and psychology joint major at Trent University, and mental health advocate
- Laura MacGregor, PhD, Lived Experience Advisor, Associate Professional Faculty, Martin Luther University College/Wilfred University and Director of Luther Centre for Spirituality, Disability, and Care
Speakers provided an overview of data on how transitions from youth to adult health care services affect young people’s health care outcomes and introduced the six quality statements from the quality standard. The panelists then shared their insights on how implementing the Transitions From Youth to Adult Health Care Services quality standard will improve the transition process for young people, their parents and caregivers, and the health care providers who support them. A robust question and answer period followed.
View the webinar here.
Question and Answer
With the help of the expertise from our speakers, we are sharing the answers to the questions we received during the webinar. If you have any additional questions, comment below or you can email firstname.lastname@example.org.
1. What essential steps/tasks should health professionals complete to help support the client during transition of services?
Health care professionals should strive to incorporate the practices outlined in the six quality statements into their transition process, namely:
- Identifying young people who will transition out of child- and youth-oriented services as early as possible and having regular collaborative reviews of transition readiness to support their ongoing preparation needs for transition (and the needs of their parents and/or caregivers)
- Offering young people (and their parents and caregivers, where appropriate) developmentally appropriate information and support to meet their needs throughout the transition process. Information-sharing is collaborative, and health care providers actively seek the experience and expertise of the young person (and their parents and caregivers, where appropriate) and incorporate it into the transition planning and shared goal setting
- Providing young people with an individualized transition plan that is co-created, documented, and shared within their circle of care
- Identifying a designated most responsible provider to work with the young person (and their parents and caregivers, where appropriate) to coordinate their care and provide support throughout the transition process and until the young person (and their parents and caregivers, where appropriate) confirms that the transition is complete
- Ensuring the young person (and their parents and caregivers, where appropriate) have a meeting with key adult services or other providers before the transfer, to facilitate and maintain continuity of care
- Ensuring the young person remains connected to the designated most responsible provider for their transition and is supported until health care service transitions are complete and confirmed by the young person (and their parents and caregivers, where appropriate)
2. When does transition planning start?
Transition planning should begin as early as possible (see Quality Statement 1: Early Identification and Transition Readiness, page 11). “As early as possible” is defined as follows: “No specific age is recommended, as the optimal timing to start transition planning will depend on the young person’s circumstances. Transition planning may start as early as young childhood, 10 or more years before age 18. It can begin whenever the young person, their provider, and/or parents or caregivers identify that a transition to adult care will likely be necessary due to the nature of their health condition or disability.”
3. Are there targeted populations for which transition planning is most effective?
The scope of this quality standard includes all clinical populations, including young people with disabilities or special health care needs such as those with chronic and/or complex physical, intellectual, or developmental conditions and/or with mental illness and substance use. See page 1, “Scope of This Quality Standard,” for more details on scope.
4. Who should be responsible for transitioning youth to adult services?
Young people who will be transitioning from youth to adult health care services should have a designated most responsible provider for the transition process. The designated most responsible provider is one person from among the young person’s health care team who agrees to take on the role of coordinating the transition to adult services. This provider is identified early on and may change over time, given that the transition process is often prolonged. The young person (and their parents and caregivers, where appropriate) helps decide who this provider will be. In some instances, it may be a nurse, social worker, youth worker, or primary care provider. In other instances, this provider may have a job title such as “transition navigator,” “transition lead,” “transition coordinator,” “transition worker,” or “case manager.” See Quality Statement 4: Coordinated Transition (page 27) for more details.
5. What is the process for formally handing over the young person’s care from the pediatric to adult provider?
Quality statements 1 to 6 of the Transitions From Youth to Adult Heath Care Services quality standard outline a process for handing over a young person’s care from youth to adult health care services. Of note, the section “What This Quality Statement Means” for organizations and health services planners (Quality Statement 3: Transition Plan, pages 25–26) includes the following details:
Ensure that youth-oriented and adult services have systems, processes, and resources in place to
- Give young people transitioning from youth-oriented to adult services (and their parents and caregivers, where appropriate) a written copy (printed or ideally digital) of their transition plan before they transfer out of youth-oriented services
- Enable standardized documentation and communication strategies (e.g., electronic portal) to allow for clear and timely communication of the transition plan with an adult service or another provider and with primary care and home and community care providers (timely meaning at a collaborative transition meeting [see quality statement 5] or within 1 month before the last visit with youth-oriented services)
Similarly, the section “What This Quality Statement Means” for clinicians includes specific details for health care providers (see page 25).
6. How can health care providers better incorporate the voices of young people and caregivers into transition planning?
Each quality statement in the Transitions From Youth to Adult Health Care Services quality standard emphasizes the importance of working collaboratively with young people and their caregivers, and treating them as respected members of the young person’s health care team. For example:
- Quality Statement 1 (page 12) emphasizes that reviews of the young person’s readiness for transition “must be collaborative, involving the young person, parents and caregivers, and providers.”
- Quality Statement 2 (page 17) defines collaborative information-sharing as “the mutual sharing and exchange of information between the young person (and their parents and caregivers, where appropriate) and health care providers and allows the young person time to reflect on and discuss the information,” and encourages “actively seek the experience and expertise of the young person (and their parents and caregivers, where appropriate) and incorporate it into the transition planning and shared goal-setting.”
- Quality Statement 3 (page 22) states that the transition plan is “Co-created: Young people (and their parents and caregivers, where appropriate) work collaboratively with their health care providers to develop the transition plan together.”
- Quality Statement 4 (page 27) states that the young person (and their parents and caregivers, where appropriate) helps decide who the designated most responsible provider for their coordinated transition will be. Furthermore, the designated most responsible person continues to support the young person until the young person (and their parents and caregivers, where appropriate) agrees that the transition is complete.
- Quality Statement 5 (page 30) emphasizes that the transition meetings with key adult services or other providers before the transfer of care are “collaborative” and include the young person (and parents and caregivers, where appropriate).
- Quality Statement 6 (page 33) underlines the importance of the designated most responsible provider continuing to support the young person “until health care service transitions are complete and confirmed by the young person (and their parents and caregivers, where appropriate).”
See also Appendix 4: Values and Guiding Principles, which includes the following guiding principle of care:
- Youth-Centred (Person-Centred) Care: Youth-centred (or person-centred) means recognizing and acknowledging the young person as the expert of their own lived experience and as an equal partner in the transition process, and taking account of their views and needs about their own care and support. All of a young person’s needs are supported as they emerge and change over time, including those related to their wider context (e.g., education and employment, meaningful participation, health and wellness including mental health, and community integration).
7. What are your best-practice guidelines?
Key clinical guideline sources used to inform development of the quality standard included:
8. Where can I find current data related to the transition from youth to adult health care services and related outcomes?
Data related to the transition from youth to adult health care services is included in the “Why This Quality Standard is Needed” section of the quality standard (page 5) and in the Case for Improvement slide deck available on the Transitions From Youth To Adult Health Care Services quality standard resources page
9. How do things like funding for private services, access to health services, and mental health services change when a young person turns 18 years of age?
The quality standard does not specifically address each of these areas, but does point to some resources on these topics:
Questions Related to Resources
10. Where can I find resources to help parents and caregivers?
Please refer to the Resources for Young People and Their Caregivers on the Transitions From Youth to Adult Health Care Services quality standard webpage to find links to helpful information, videos, and toolkits to support parents and caregivers of young people going through the transition process.
11. What resources are there to support young people with mental health and/or substance use issues during the transition to adult health care services?
The Canadian Mental Health Association’s webpage on Transitioning from Youth to Adult Mental Health Services provides an overview of what this transition is like and lists resources to support this transition. The Service Transition Plan: Moving to Adult Mental Health and Addiction Services, co-designed by young people for young people, is a transition plan to help young people, their families, and care providers prepare for their move into mental health and addiction services for adults.
12. Which smartphone applications are recommended to assist teens in managing their own care?
The MyTransition App version 2.0, developed by CanChild and McMaster University, is designed to help young people between the ages of 12 to 18 years begin taking charge of their health care as they approach adulthood. Available to download for free on Apple and Android devices, MyTransition App’s key features include:
- TRANSITION-Q: A quiz that figures out ways to make the transition to adult care as smooth as possible.
- MyHealth 3-Sentence Summary: A way to summarize health information to help you speak with doctors, nurses, or therapists.
- MyHealth Care Team: A place to enter contact information for your health care providers.
- Goals: A section that allows you to select items from the TRANSITION-Q to set as goals. It also provides links with tips on how to improve in these areas.
Alternatively, the Just TRAC it! Video by BC Children’s Hospital teaches young people how to use their smartphone’s built-in apps to manage their health care.
Please see the Resources for Young People and Their Caregivers to find additional tools and resources to support young people and their caregivers during the transition from youth to adult health care services.
13. Are there any resources to help with designing transition program for youth with type 1 diabetes? Heart transplant?
The key areas for improvement outlined in the six quality statements are applicable to a broad population, and therefore would apply to young people with type 1 diabetes or to those who have had a heart transplant, and any transition program designed for them should incorporate these elements. As the scope of the Transitions From Youth to Adult Health Care Services quality standard includes all clinical populations, condition-specific resources were not compiled as part of its development; however, the BC Children’s Hospital Transition to Adult Care website includes the following clinical support tools for young people with type 1 diabetes and transplants that might be useful as an example:
- Transition Clinical Pathway(s)—Simple or Complex—a health care provider's tool to support the planning and preparation of youth with CHC/Ds starting at 12 years of age
- Medical Transfer Summary—a comprehensive template to guide the transfer of patient medical information to adult specialists (Dictation Code 102 Transfer Summary with BC Transcription Services)
- Transfer Referral Cover Sheet—requesting the transfer of care to adult specialists
Questions about Access to Primary Care or Specialist Care
14. Do you have any recommendations on how to find a primary care provider who will accept the young person as a patient?
Here are two resources that may be helpful in finding a primary care provider:
15. Do you have any recommendations on how to manage long waitlists for specialists?
The quality standard does not specifically address how to manage waitlists. However, there is relevant information within the quality statements and/or the supporting definitions and rationale sections. For example:
- Quality Statement 1: Early Identification and Transition Readiness (page 11): The quality statement says: “Young people who will transition out of child- and youth-oriented services are identified as early as possible….” This early identification could kickstart the process to find an appropriate adult service or another provider who will accept the transfer
- Quality Statement 6: Transfer Completion (page 33): The quality statement says, “Young people remain connected to the designated most responsible provider . . . until health care service transitions are complete . . ." The definition of “remains connected” explains that the designated most responsible provider continues to follow the young person and check in with them (e.g., by phone, secure text, email) until they have their first visit with the adult care provider and to assist in addressing any needs that may come up while the young person waits for adult care to be established. The definition of “supported until health care service transitions are complete and confirmed” also addresses long waits with the following: “If there is no equivalent adult service or other provider, or if there is a long wait to establish care with the adult service, then an appropriate care provider must be identified to address any health care needs. In most cases, the primary care provider takes on this role.” See the full definitions for more detail.
16. Questions Related to Funding, Policy, and Programs
What changes to funding, policy or programming will occur as the result of the Transitions From Youth to Adult Health Care Services quality standard? (This question is an amalgam of several queries on whether additional funds, health human resources, or programs would be implemented to support care as described in the quality standard).
The purpose of this quality standard is to describe high-quality care for young people who are transitioning from youth to adult health care services (and their parents and caregivers). The quality standard does not directly make recommendations for funding, policy, or programs; however, the quality standard may be used as a tool to help advocate for programs, funding, or models of care. The Quality Standards Program has recently developed an implementation framework and strategy that captures the common opportunities that will enable system uptake of the quality standards and will take action to deliver on high-impact priorities over the next 2 years.
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View the Quality Standards Webinar Library for other past webinars on various topics.