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 monogram
Reese Marlowe in Health & Wellness November 2026 • 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.

AI Search Multiple angles on this topic

What Congenital Means

The National Human Genome Research Institute explains that "congenital" refers to a disease, disorder, or trait thought to originate around pregnancy or birth. Congenital heart disease, for example, involves structural defects in the heart that are noted shortly after birth. Biology Insights similarly defines a congenital condition as a structural, functional, or metabolic abnormality present at or before birth, regardless of its cause or when it is detected.

Individualized Care

Care for teens and young adults with heart conditions generally needs to be individualized rather than based on a single standard pathway. Medical decisions may depend on the person's diagnosis, symptoms, treatment history, and stage of development. Because this subsection has no source material, these points should be treated as general guidance rather than as a definitive account of accepted methods or their limitations.

A Developing Field

The transition from pediatric to adult heart care reflects the broader development of medicine and longer-term management of chronic conditions. Earlier approaches may not have addressed the educational, emotional, and practical needs of young adults as explicitly as current care models do. Without source material for this subsection, no specific milestone or historical claim can be established here.

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.
AI Search Multiple angles on this topic

Evidence Continues to Develop

Research on transitioning with a heart condition is likely to evolve as clinicians study long-term outcomes and the needs of young adults. Current evidence may not answer every question about education, independence, mental health, and continuity of care. Because no sources were provided for this subsection, this overview is intentionally general and does not assert specific research findings.

Where Transitions Can Falter

A transition plan may not work equally well for every young person with a heart condition. Gaps can arise when responsibilities shift too quickly, communication is unclear, or care is not adapted to changing needs. Without sources for this subsection, these are general possibilities rather than documented findings about particular programs or outcomes.

Different Paths to Adult Care

Transition experiences can differ according to the complexity of a person's heart condition, available services, family support, and readiness for greater independence. Comparing care pathways may help identify which approaches are practical for different patients, but no single model can be assumed to fit everyone. No source material was provided here, so this comparison remains appropriately broad.

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.

AI Search Multiple angles on this topic

Coordinated, Person-Centered Care

A useful synthesis is that transition should address both medical continuity and the young person's growing role in managing care. Preparation, clear communication, and individualized support are commonly treated as important elements of that process. Because this subsection has no sources, these statements are general guidance rather than attributed expert commentary.

Building Better Transitions

Future efforts may focus on making transition planning more consistent, accessible, and responsive to individual needs. New approaches could also place greater emphasis on self-management, digital communication, and coordination between pediatric and adult services. No source material was supplied for this subsection, so these possibilities should not be read as confirmed predictions.

Beyond the Clinic

Successful transition can be affected by more than medical treatment alone, including access to adult specialists, insurance, transportation, education, and family or community support. These broader conditions may create uneven experiences for young people with similar diagnoses. Without sources for this subsection, the paragraph identifies general systemic considerations rather than measured disparities.

Living Through Transition

For teens and young adults, transitioning with a heart condition can involve balancing health needs with school, work, relationships, and increasing independence. Personal confidence, family involvement, and trust in clinicians may influence how manageable that process feels. No sources were provided for this subsection, so these points are general observations rather than findings from a named study.

Follow-up gaps across congenital heart disease reports

  • 26.1% %Across studies, reported discontinuity ranged from 3.6% to 62.7%; the pooled proportion was 26.1% (95% CI, 19.2%–34.6%).[1]
  • 49.5%; 61% %In a separate cohort, 49.5% of patients were actively missing, and 61% of interview responders reported no current cardiology follow-up.[2]

What follow-up figures do-and do not-show

Together, these reports show that continuity of cardiac follow-up varies substantially across the reported settings. The pooled figure summarizes a range of results; it does not describe the experience of every young person or the outcome of a particular transition guide.[1] [2]

The reported association between lapses in care and urgent intervention signals that follow-up continuity matters clinically, but the excerpt does not establish that a lapse itself caused an intervention.[1]

How transition reports frame care and its challenges

Childhood care is typically provided in pediatric cardiology, while adult congenital heart disease programs provide follow-up during adulthood.[1]

A separate account identifies continuity, trust, autonomy, knowledge, logistics, psychosocial factors, and differences in cardiac conditions as intertwined challenges; it does not compare their relative effects.[3]

Another report draws on participants’ recollections reaching back approximately 9–11 years, so later experiences may have shaped how they remembered factors related to continuing care.[4]

Questions about continuity and transfer

  • How should reported knowledge or self-care be interpreted when its assessment involved individual judgment by experienced clinical nurse specialists?[5]

Common questions about moving to adult care

What changes during transition?

The process can involve both transferring medical care from pediatric to adult professionals and shifting responsibility for care from parent to young person.[6]

Sources

  1. Discontinuity of Cardiac Follow‐Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta‐Analysis (pmc.ncbi.nlm.nih.gov)
  2. Hope is No Plan: Uncovering Actively Missing Transition-Aged Youth with Congenital Heart Disease (pmc.ncbi.nlm.nih.gov)
  3. Adolescents and Adults With Congenital Heart Disease: Why Are They Lost to Follow-Up? (pubmed.ncbi.nlm.nih.gov)
  4. Qualitative study of facilitators and barriers for continued follow-up care as perceived and experienced by young people with congenital heart disease in Sweden (pmc.ncbi.nlm.nih.gov)
  5. Transition to adult care of young people with congenital heart disease: impact of a service on knowledge and self-care skills and correlates of a successful transition (pmc.ncbi.nlm.nih.gov)
  6. Advances in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: A Practical Approach to Transition Program Design: A Scientific Statement From the American Heart Associatio (pmc.ncbi.nlm.nih.gov)

About this Article -

Written with AI assistance from published research, and reviewed by the Mystum team. See our About page for more information.

Everything You Need To Know

1

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.

2

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.

3

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.

4

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.

5

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.

Newsletter Subscribe

Subscribe to get the latest articles and insights directly in your inbox.