Action is needed to improve transition to adult care for youth with complex health care needs

OTTAWA –  The process of transitioning youth with complex health care needs to adult care poses unique challenges for all involved.  

A new document released today by the Canadian Paediatric Society’s Adolescent Health Committee recommends that parents and caregivers start transition planning as early as possible, to ensure youth with complex health care needs receive continuous care during what can be a vulnerable time.

Because treatment for many childhood conditions has advanced, the number of youth with complex health care needs is increasing. Complex health care needs can include physical, developmental and mental health conditions, as well as medical complexity.

“Despite our vast knowledge of the challenges associated with transition to adult care, we have not made significant advancements to streamline and safeguard care for youth transitioning to adult services,” says Dr. Megan Harrison, an adolescent health physician at CHEO, and co-author of the CPS position statement.

Youth with complex health needs often face poor outcomes when transitioning from paediatric to adult care, due to gaps in access. Poor health outcomes after moving from paediatric to adult care have been documented for youth with type 1 diabetes, cystic fibrosis, congenital heart disease, organ transplants, and other conditions.

As there is no universal, legally-defined age of consent for health care decision-making in Canada, flexibility is critical when it comes to transition planning. Youth should be given increasing levels of responsibility over their health care—at their own pace—as they move through adolescence.

“We need to think outside the box and advocate for more flexible age cut-offs for transfer to adult care,” says Dr. Alène Toulany, an adolescent medicine specialist at The Hospital for Sick Children and co-author of the statement.

“Considering each youth’s developmental stage and capacity as well as patient and family needs and circumstances are essential for a successful transition.”

A successful transition ensures care that is continuous, coordinated, and adapted to each youth’s development and maturity, while improving (or at least maintaining) disease management, patient satisfaction, quality of life, and social participation throughout young adulthood.

Primary care providers are key to ensuring continuous care in the transition process. Specialized transition education and training among primary care providers is critical, as many feel ill-equipped to manage the level of care required for complex needs.

To ensure the well-being of youth with complex care needs, the CPS recommends that health care providers, caregivers and policy-makers support successful health care transitions by:

• Ensuring care is continuous, comprehensive, coordinated, developmentally appropriate and meets the needs of everyone: patients, families and health care providers.
• Preparing youth for transition with a stepwise plan that increases their autonomy, considers their development and capacity and recognizes changing parent and caregiver roles.
• Collaboratively developing strategies between paediatric and adult care providers that streamline and safeguard care for youth transitioning to adult care. Health care providers should advocate in support of integrated care models across tertiary, community, and primary care settings, taking youth-centered approaches.
• Supporting new educational initiatives to increase capacity of care for youth with complex care needs in diverse clinical settings. A collaborative, national approach to education that involves youth, families and paediatric, adult, and primary health care providers is imperative.
• Funding adaptable programs and physician compensation systems that support continuous, shared, and integrated care during the transition period are essential. Models should be flexible regarding age cut-offs and shared care between paediatric and adult health services.
   

Guidance for clinicians can be found here.

Recommended resource

Children’s Healthcare Canada’s (CHC) Child Health Hub in Transition to Adult Healthcare: https://www.transitionhub.ca.

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For more information or to schedule an interview, please contact:

media@cps.ca

About the Canadian Paediatric Society

The Canadian Paediatric Society is a national advocacy association that promotes the health needs of children and youth. Founded in 1922, the CPS represents more than 3,300 paediatricians, paediatric subspecialists and other child health professionals across Canada.