Illustration of a transition from childhood to adulthood for someone with congenital heart disease.

Transitioning with a Heart Condition: A Guide for Teens and Young Adults

Reese Marlowe in Health & Wellness December 2025 • 4 min read.

"Navigating adulthood with congenital heart disease? Learn how standardized transition care models can smooth the way."

Congenital heart disease (CHD), a structural abnormality of the heart present at birth, affects approximately 9 in every 1,000 newborns. Thanks to advances in diagnosis, surgery, and overall medical care, more and more children with CHD are living into adulthood. In fact, it's estimated that up to 90% of surgically treated infants with CHD now survive into adulthood.

This success has led to a growing population of adults with congenital heart disease (GUCH), individuals aged 18 and older who require specialized care and lifelong clinical follow-up. While much research has focused on childhood CHD management or the challenges faced by adults with GUCH, the transition period between childhood and adulthood has received less attention.

This article explores the importance of transition care models for adolescents with CHD, drawing insights from an Italian experience at Policlinico San Donato (PSD) to highlight key perspectives and strategies for successful transition.

Why is Transition Care Important for Teens with CHD?

Illustration of a transition from childhood to adulthood for someone with congenital heart disease.

The transition from pediatric to adult care can be a particularly vulnerable time for young people with CHD. As they gain independence, they may face a range of challenges related to:

Transition care models aim to equip adolescents with the knowledge, skills, and confidence they need to manage their health and navigate the complexities of adulthood. These models emphasize:

Health-Promoting Behaviors: Encouraging healthy habits like regular exercise and good dental hygiene.
Psychological Well-being: Addressing issues related to body image, social functioning, anxiety, and depression.
Risk Reduction: Providing education about the dangers of smoking, alcohol, and drug use.
Informed Decision-Making: Empowering patients to take an active role in their care and make informed decisions about their health.

Ultimately, the goal of transition care is to optimize lifelong function and ensure that young adults with CHD receive high-quality, uninterrupted services.

The Future of CHD Transition Care

Understanding the unique needs of adolescents with CHD is crucial for providing effective and personalized care. The transition model presented here, which links clinical practice with research, offers a promising approach to improve the lives of young people with CHD as they navigate the path to adulthood. By continuing to investigate these models, healthcare professionals can further enhance their ability to support patients and promote long-term well-being.

About this Article -

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Everything You Need To Know

What is Congenital Heart Disease (CHD), and how does it impact young adults?

Congenital Heart Disease (CHD) is a structural abnormality of the heart present at birth, affecting roughly 9 in every 1,000 newborns. As individuals with CHD, now often referred to as Grown-Up Congenital Heart Disease (GUCH), reach adulthood, they require specialized care and lifelong clinical follow-up. The transition from childhood to adulthood can be challenging, and transition care models are crucial for these young adults to navigate these complexities and manage their health successfully, ultimately ensuring they receive uninterrupted, high-quality services.

Why are transition care models important for adolescents with CHD?

Transition care models are vital because the shift from pediatric to adult care is a vulnerable time for young people with CHD. These models equip adolescents with the necessary knowledge, skills, and confidence to manage their health independently as they navigate adulthood. They emphasize health-promoting behaviors, psychological well-being, risk reduction, and informed decision-making. The transition care models aim to ensure young adults with CHD are prepared to manage their health proactively and receive the appropriate ongoing care.

What specific areas do transition care models address to support young adults with CHD?

Transition care models focus on several key areas to support young adults with CHD. These include health-promoting behaviors, such as regular exercise and good dental hygiene. They address psychological well-being, helping individuals cope with body image issues, social challenges, anxiety, and depression. The models also cover risk reduction by educating about the dangers of smoking, alcohol, and drug use. Furthermore, they encourage informed decision-making, empowering patients to actively participate in their care and make informed choices about their health.

How do transition care models aim to improve the long-term well-being of individuals with GUCH?

The primary goal of transition care models is to optimize lifelong function and ensure that young adults with CHD receive consistent, high-quality services. By focusing on health-promoting behaviors, psychological well-being, risk reduction, and informed decision-making, these models help individuals with CHD navigate the complexities of adulthood, manage their health effectively, and build independence. This proactive approach supports their overall health and well-being, enabling them to thrive.

What insights can be drawn from the Italian experience at Policlinico San Donato (PSD) regarding transition care for adolescents with CHD?

The experience at Policlinico San Donato (PSD) offers valuable perspectives and strategies for successful transition care. The model presented here links clinical practice with research, creating a promising approach to enhance the lives of young people with CHD as they transition to adulthood. By examining this model, healthcare professionals gain a deeper understanding of the needs of adolescents with CHD, allowing them to provide more effective, personalized care and continuously improve support for patients, ultimately promoting long-term well-being and positive outcomes.