Key Patient Messages 2025 Guideline for the Management of Adults with Congenital Heart Disease

  1. Individuals with adult congenital heart disease (ACHD) have better health outcomes when they receive care at an ACHD center. Adults with ACHD will face different challenges than kids with the same condition and need to take care of their health in different ways.

  2. It’s important to help teens transition to ACHD treatment centers.The typical age to begin planning transition to this type of care is around 12 -16 years old. Routine check-ups are very important. Unfortunately, as many individuals transition out of pediatric care, they struggle to connect with health centers for adults with a CHD.

    To help with this transition, it’s helpful to:

    • Understand their specific heart condition to make informed decisions about their health and prepare for potential adult CHD-related issues.
    • Understand how to navigate the healthcare system.
    • Clarify health insurance options and processes.

  3. Individuals with ACHD need to meet with a team of different medical specialists called a multidisciplinary team to help with complex decision making. This is particularly important for individuals with complex heart problems who may need special guidance to make treatment decisions.

    These are some of the healthcare professionals on the ACHD care team:

    • Adult Congenital Cardiologists – These clinicians care for adults who were born with heart problems. They take over when patients are too old to keep seeing their pediatric heart doctor.
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    • Congenital Cardiac Surgeons – These are clinicians who perform surgery on the heart and blood vessels to fix serious health issues.
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    • Electrophysiologists – These clinicians treat problems with how the heart beats, like irregular heart rhythms.
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    • Interventional Cardiologists – These clinicians use thin tubes called catheters to treat heart problems without doing open-heart surgery.
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    • OB/GYNs & Maternal-Fetal Medicine Specialists – These clinicians help with pregnancy care and reproductive health for women who are pregnant or planning to become pregnant.
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    • Genetic Counselors – These professionals help people understand how certain health conditions can be passed down to their children.
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    • Heart Failure & Transplant Cardiologists – These clinicians treat patients with heart failure and help those who may need a heart transplant.
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    • Pulmonologists – These clinicians treat lung and breathing problems, which can often affect people with heart conditions.
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    • Hepatologists – These clinicians treat conditions that affect the liver.
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    • Other Clinical Team Members – Advanced practice providers, nurses, social workers, and other clinicians may also be involved in the care team.
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    • These specialists work together to build a care plan that matches each ACHD patient’s unique heart and health needs.

  4. If accessing an ACHD center is difficult, talk with your clinician about what can help you get connected to this type of clinical care. They may know about resources that can help you.

  5. It’s important to consult with an ACHD cardiologist before undergoing any procedures and surgeries – whether related to their heart or not. Particularly if they have a moderate or complex CHD. Their cardiologist can help them understand any risks to their heart and decide on the best care plan.

  6. It’s important to talk about reproductive health with the care team.
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    • Individuals with ACHD who can become pregnant should talk with their ACHD cardiologist to understand the best and safest birth control options, genetic testing, how a pregnancy could affect their health, and safe birthing options. The majority of pregnant patients with ACHD can undergo vaginal delivery safely.
    • Men with ACHD may also discuss their reproductive health with their care team, including whether genetic testing is appropriate for them.

  7. In patients with complex ACHD and atrial arrhythmias, rhythm control is generally preferred over rate control due to their unique anatomy and potential intolerance of rapid heart rates.

  8. There are new ways for when and how to help patients with both ACHD and heart failure. Talking with the care team to understand when and how this could change the care plan is important.

  9. There are also new ways to help individuals with Fontan physiology. People with Fontan circulation need to get checked every year with scans and blood tests to keep track of their heart and liver health. They should also see a liver doctor, called a hepatologist, because they might be at risk for a condition called Fontan-associated liver disease (FALD).

  10. Assessment of mental health needs for patients with ACHD is important. Mental health support is an important part of overall care. It’s a good idea to regularly check for signs of depression, anxiety, PTSD, and thinking or memory problems. There are safe and effective treatments to help.