Youth Need Better Transition to Adult Care, Pediatricians Say

Carolyn Crist

April 28, 2022

Pediatric and adult care clinicians, as well as family doctors and community partners, should collaborate to better streamline the transition from pediatric care to adult care for youth with complex medical needs, according to a new position statement from the Canadian Paediatric Society.

To help patients, doctors particularly need system-based strategies, including specialized training in transitional care issues and transfer recommendations based on each patient's developmental stage.

"There is a serious lack of care integration across various sectors — especially primary and tertiary or specialty care — and this has a negative impact on youth engagement and potentially jeopardizes their health outcomes as young adults," lead author Alene Toulany, MD, an adolescent medicine specialist at the Hospital for Sick Children and assistant professor at the University of Toronto, Canada, told Medscape Medical News.

"We need to address these barriers in order to improve the quality of care and experience during transition for both youth and their families," she said.

The position statement was published online April 13.

Four Proposed Steps

In Canada, provincial and territorial funders require youth to transition from pediatric to adult care between ages 16-19 years. The current configuration of pediatric and adult services often leads to fragmentary care, which can create barriers for continuity of care, particularly for young adults with complex physical, developmental, or mental health conditions.

Toulany, along with the Canadian Paediatric Society's Adolescent Health Committee, drafted the position statement to bring attention to a more system-based approach to improve care. The committee's members include Jan Willem Gorter, MD, PhD, professor of pediatrics at McMaster University in Hamilton, Ontario; and Megan Harrison, MD, associate professor of pediatrics at the University of Ottawa, Ontario.

"Despite our vast knowledge of the challenges associated with transition to adult care, we have not made significant advancements in improving outcomes for youth over the last 20 years," said Toulany.

In the position statement, the authors outlined four core steps of a successful transition, emphasizing that each component should be youth-centered, strengths-based, and developmentally appropriate.

In the first step, providers should start transition planning early by regularly assessing transition readiness with patients and their caregivers. Doctors should understand each young adult's potential and goals for activity, education, recreation, and vocation.

In the second step, providers should create an individual transition plan and identify a transition "champion," or a clinician who coordinates the various providers and seeks input from the patient and their caregivers, addressing gaps in youth preparedness, autonomy, and confidence where needed.

In the third step, doctors should provide support before the transition by offering education and peer support for patients and their caregivers. This phase could include a stepwise approach to increase independence in care management and a comprehensive health transfer summary based on the family's priorities.

In the fourth step, doctors should provide ongoing support after the transition by ensuring that patients attend their appointments and by monitoring their attachment to adult services. This could continue to include caregivers based on the patient's preferences, with gradual weaning over time.

The overarching goals are to increase the young patient's level of responsibility for their own healthcare management, strengthen their understanding of their chronic health conditions, and build their skills to navigate the complex adult healthcare system.

"As a clinician–scientist, I have seen firsthand how young people with chronic health conditions and their families struggle and often feel alone," Gorter told Medscape Medical News.

"Only together we can learn from each other and we can develop realistic solutions and healthcare interventions that will have a direct impact on patients, their families, and those working in the health care system," he said.

Avoiding Poor Outcomes

Transitioning youth with complex healthcare needs involves more than the medical transfer itself, the authors write. The patients, their caregivers, and multiple doctors must be included. Without a proper transition, poor health outcomes often occur once young adults move toward adult services.

For instance, in a study conducted in Ontario, the rate of diabetes-related hospital admissions increased significantly in the 2 years after transfer to adult care, the authors wrote. In another study, nearly one half of Ontario youth had more than a 12-month gap in their diabetes care while transitioning to adult care. Other studies in Canada have noted complications for youth with cystic fibrosis, congenital heart disease, and organ transplants.

In addition, adolescence and young adulthood bring on other major physical, psychosocial, and developmental changes, which can further affect health outcomes. During this time, youth need support in building self-management skills, navigating new relationships, and adapting to shifts in education, career, housing, and personal circumstances, the authors write. With all the changes, young adults may not rank health as highly as other transition areas in their lives.

"Coupled with other life transitions that occur at the same time as healthcare transition, this is a challenging stage of life," Andrew Mackie, MD, a congenital heart disease specialist at Stollery Children's Hospital and a professor of pediatrics at the University of Alberta, Edmonton, told Medscape Medical News. He was not involved in drafting the position statement.

"What a missed opportunity it would be for healthcare professionals to have invested so many resources into saving lives in childhood, only to drop the ball on adolescents and young adults as they age out of pediatric care," he said.

Tailoring the Transition

Transition interventions should be carefully tailored, timed, and integrated into the broader healthcare system, the authors write. Limited evidence supports any particular intervention due to the complex nature of chronic health conditions, as well as physical and mental comorbidities. That means flexibility in transition care is essential, they write.

More flexible age cutoffs, rather than a chronological age requirement, could better reflect developmental age and readiness for transition, the authors write. Under this model, youth would receive increasing levels of information and responsibility as they move through the developmental stages of adolescence at their own pace. Program funding and payment models could support continuous, shared, and integrated care among pediatric and adult health services.

Healthcare system leaders should also recognize specific high-risk groups to ensure equitable access to healthcare services. Children with complex health care needs who live in rural or remote settings, for instance, may need more extensive transition support, as well as those who face economic, educational, or cultural marginalization.

Primary care teams and community services should be involved in a "holistic approach" during the transition, the authors say, and integrate social determinants of health — such as housing, school, employment, and social services — to meet needs of youth "where they live."

"Transition to adulthood can be overwhelming, and we all know that it is hard to change practice," said Gorter. "It starts with taking action. Everyone can do something, and the little things can make a big difference."

The position statement was reviewed by the Bioethics, Community Paediatrics, and Mental Health and Developmental Disabilities Committees of the Canadian Paediatric Society (CPS), as well as by the CPS Hospital Paediatrics Section Executive. It has also been reviewed by the Pediatric Chairs of Canada and members of the College of Family Physicians of Canada, Advisory Committee on Family Practice, and was reviewed and endorsed by Children's Healthcare Canada . Toulany, Gorter, and Mackie have disclosed no relevant financial disclosures.

Canadian Paediatric Society. Published online April 13, 2022. Full text

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