Path transitioning from childhood to adulthood for teens with Congenital Heart Disease

CHD Transition: A Roadmap for Adolescents Navigating Congenital Heart Disease

Kai Mendoza in Health & Wellness December 2025 • 4 min read.

"Empowering teens with CHD: Expert insights, transition models, and essential strategies for a seamless journey to adulthood."

Congenital Heart Disease (CHD), encompassing structural heart or great vessel abnormalities, affects approximately 9 in every 1,000 live births. Thanks to advances in diagnosis, surgical techniques, and medical care, up to 90% of infants with surgically treated CHD now survive into adulthood. This has led to a growing population of adults with CHD (GUCH), highlighting the need for specialized care planning and lifelong clinical follow-up.

While much research has focused on the clinical management of CHD in childhood or the unique challenges faced by adults with GUCH, the transition period from childhood to adulthood has only recently gained attention. Although various transition care models exist, including both generic and disease-specific approaches, there's a lack of real-world implementation experiences and perspectives to guide effective strategies.

This article delves into the experiences of clinicians at Policlinico San Donato (PSD) in Italy as they implement CHD transition care models. Our goal is to provide insights into the practical application of these models, emphasizing key perspectives and strategies to improve the transition process for adolescents with CHD.

Why Transition Care Matters: Addressing the Unique Needs of Teens with CHD

Path transitioning from childhood to adulthood for teens with Congenital Heart Disease

Transition care models play a crucial role in promoting healthy behaviors and addressing the psychological challenges that adolescents with CHD often face. As these young individuals develop their self-identity, self-esteem, and self-image, they may encounter a range of issues, including:

These challenges can significantly impact their overall well-being and adherence to necessary medical care.

Body Image Concerns: Modifications in body image, such as scars from surgeries, can affect self-perception and confidence.
Social Functioning Difficulties: Issues with family and peer relationships can arise due to the unique challenges of living with CHD.
Increased Risk of Mental Health Issues: Anxiety, depression, and diminished self-esteem are common, often linked to personal challenges.
Risky Health Behaviors: There may be an increased likelihood of smoking, alcohol or illicit drug use, and engaging in risky sexual behaviors.

Interestingly, adolescents with CHD often prioritize peer relationships over their clinical condition, potentially leading to less attention to health-promoting behaviors like physical exercise and dental hygiene. The dynamics between parents and adolescents with CHD can also be complex, marked by parents' hyper-responsibility and overprotection conflicting with the adolescents' desire for independence.

Looking Ahead: The Future of CHD Transition Care

Understanding the needs of adolescents with CHD is essential for providing effective care that addresses the diversity and complexity of their experiences. This understanding will guide healthcare professionals and shape care processes. Further research is crucial to fully grasp these needs and establish evidence-based models. By linking clinical practice with ongoing research, we can improve our understanding of adolescent patients' needs and strengthen transition models, ensuring a smoother, healthier transition into adulthood.

About this Article -

This article was crafted using a human-AI hybrid and collaborative approach. AI assisted our team with initial drafting, research insights, identifying key questions, and image generation. Our human editors guided topic selection, defined the angle, structured the content, ensured factual accuracy and relevance, refined the tone, and conducted thorough editing to deliver helpful, high-quality information.See our About page for more information.

Everything You Need To Know

What exactly is Congenital Heart Disease (CHD)?

Congenital Heart Disease (CHD) refers to structural abnormalities of the heart or its major blood vessels that are present at birth. These conditions can vary widely in severity and may require surgical intervention, medical management, or both. Advances in medical care have significantly improved survival rates for individuals with CHD, leading to a growing population of adults with CHD, also known as GUCH. Consequently, specialized care and lifelong follow-up are essential to address their unique healthcare needs.

Why are transition care models considered so important for teens with CHD?

Transition care models are essential because they address the unique needs of adolescents with Congenital Heart Disease (CHD) as they move into adulthood. These models focus on promoting healthy behaviors and managing psychological challenges such as body image concerns, social difficulties, mental health issues like anxiety and depression, and risky behaviors. Effective transition care aims to empower adolescents with CHD to manage their health independently while addressing potential conflicts between parental overprotection and their desire for autonomy.

What specific challenges might adolescents with CHD face?

Several factors, such as body image issues from surgical scars, social difficulties stemming from their condition, mental health issues like anxiety and depression, and risky health behaviors, can impact adolescents with Congenital Heart Disease (CHD). These challenges can affect their self-esteem, adherence to medical care, and overall well-being. Also, adolescents tend to prioritize peer relationships over their health, influencing health-promoting habits like exercise and dental hygiene.

What steps can be taken to make transition care better for teens with CHD?

To improve transition care, healthcare professionals need a deeper understanding of the diverse and complex experiences of adolescents with Congenital Heart Disease (CHD). This involves ongoing research to establish evidence-based models that address their specific needs, linking clinical practice with research to strengthen these models. By doing so, transition care can be improved to ensure a smoother and healthier transition into adulthood for these individuals.

Why do adults with Congenital Heart Disease (GUCH) need lifelong clinical follow-up?

Adults with Congenital Heart Disease (GUCH) require lifelong clinical follow-up due to the potential for long-term complications and the need for specialized care. These individuals may face unique challenges related to their heart condition as they age, including the need for ongoing monitoring, medication adjustments, and potential interventions. Lifelong follow-up ensures that their healthcare needs are met and that they can maintain optimal health and well-being.