Screenings for adults with congenital heart disease

The main guidelines

In the US, the American College of Cardiology and American Heart Association, with three other societies, published a new guideline for adults with congenital heart disease online in December 2025. It replaces their 2018 guideline. (ACC/AHA 2025) In Europe, the European Society of Cardiology (ESC) published its guideline in August 2020. (ESC 2020) A summary of the ESC guideline says most congenital heart defects are a chronic condition that needs lifelong heart care, and that people with moderate or highly complex defects should have their checks at a specialist adult congenital heart center. (ESC 2020 summary) A 2021 comparison of the earlier US and ESC guidelines found broad agreement, with some important differences. (JACC comparison 2021) MedlinePlus says all children and adults with congenital heart defects need regular follow-up with a cardiologist throughout their life, even after repair. (MedlinePlus)

Checks the guidance lists for adults

Check	When	Source
Follow-up with a heart specialist	Throughout life, even after repair	(MedlinePlus)(ESC 2020 summary)
Heart tests: electrocardiogram, echocardiogram or heart MRI, oxygen level	As part of follow-up, chosen by the type of defect	(NHS)
Follow-up after a hole between the upper chambers (ASD) was closed with a device	Every 3 to 5 years, at any age (ESC summary)	(ESC 2020 summary)
Blood pressure in arms and legs after coarctation of the aorta	At follow-up visits, lifelong	(MedlinePlus coarctation)
Liver checks after a Fontan (exam, blood tests, liver imaging)	By 10 years after the Fontan, or earlier with signs of trouble, then ongoing	(Fontan liver review 2023)(Fontan liver review 2020)(ESC 2020 summary)
Blood pressure	All adults 18 and older	(USPSTF blood pressure, 2021)
Cancer screening	Age-appropriate, as for the general population	(Cancer review 2023)

Heart follow-up

The NHS lists the tests used for congenital heart disease in children and adults: pulse oximetry to measure oxygen in the blood, an electrocardiogram to record the heart's electrical activity, chest X-rays, heart scans such as an echocardiogram or MRI, blood tests for gene changes, and angiography. It says some people only need regular check-ups. (NHS) MedlinePlus says regular follow-up with a cardiologist is strongly recommended after tetralogy of Fallot, and lists irregular heart rhythms among its complications. (MedlinePlus tetralogy) The ESC summary says people whose hole between the upper chambers (atrial septal defect) was closed need regular follow-up if they have a remaining shunt, rhythm problems, high blood pressure in the lungs or had it closed after age 40, and that follow-up every 3 to 5 years is reasonable after closure with a device. It also says rhythm problems become more common with age. (ESC 2020 summary) See heart screenings by age.

Blood pressure

For coarctation of the aorta, a narrowing of the main artery, MedlinePlus says the provider checks blood pressure and pulse in the arms and legs, that severe high blood pressure is a possible complication, and that lifelong follow-up with a cardiologist is recommended after repair. (MedlinePlus coarctation) A 2022 review cites a study in which people who had coarctation repair had higher blood pressure and BMI than controls as early as 5 years and up to 20 years after repair. (Born to age 2022) The USPSTF recommends blood pressure screening for all adults 18 and older. (USPSTF blood pressure, 2021) See blood pressure readings: what they mean.

Liver checks after a Fontan

The Fontan operation is used for people born with only one working pumping chamber. The AHA's 2019 statement says liver scarring and reduced kidney function are common after a Fontan and may progress over time, that changes in bone and body composition have been found, and it proposes a surveillance testing toolkit for follow-up. (AHA Fontan 2019) A 2023 review says liver cancer was unlikely in the first 10 years after a Fontan, with risk rising sharply in the third decade, and that there is general consensus that checks for liver disease and liver cancer are needed by 10 years after the Fontan, or earlier with signs of Fontan failure or reduced liver function. It says these include a clinical exam, blood tests and imaging with ultrasound, CT or MRI. (Fontan liver review 2023) A 2020 review in Circulation recommends routine liver monitoring starting 10 years after the Fontan, notes that liver blood tests alone do not show how much scarring there is but are useful to follow over time, and notes that general liver cancer guidelines use ultrasound and an alpha-fetoprotein blood test every six months. (Fontan liver review 2020) The ESC summary says liver checks are now part of regular care for adults with a Fontan, even when the heart is working well. (ESC 2020 summary) See liver cancer surveillance and liver function test results.

Diabetes, kidneys and other checks

A 2022 review reports that the risk of diabetes was 1.35 times higher in people with congenital heart disease than in the general population, and that up to half of adults with congenital heart disease have abnormal lung and kidney function. (Born to age 2022) A 2026 Quebec study of more than 137,000 people found that in severe congenital heart disease, most other health conditions began before age 40, two to three decades earlier than in milder disease, with metabolic, liver and kidney disease appearing in early adulthood. (Quebec study 2026) The sources read for this page do not set a separate diabetes or kidney test schedule. See A1C and blood sugar test results, cholesterol test by age and kidney disease screening.

Cancer screening

A 2023 review says the risk of cancer is higher in people with congenital heart disease, with radiation from heart tests and procedures, genetic conditions and other factors under study. It says an American Heart Association statement recommends age-appropriate cancer screening, like the general population, and that one study found lower rates of mammograms, Pap tests and colonoscopies in women with congenital heart disease. It adds that the 2018 AHA/ACC guideline recommends limiting and tracking radiation from imaging and choosing tests without radiation when appropriate. (Cancer review 2023) A 2022 review reports cancer risk 1.65 to 2.24 times that of the general population. (Born to age 2022) The USPSTF recommends colorectal cancer screening for adults 45 to 75. (USPSTF colorectal, 2021) See cancer screenings by age.

When to contact a provider

MedlinePlus, Coarctation of the aorta, when to contact a medical professional: (MedlinePlus coarctation)

Contact your provider if:

You or your child has symptoms of coarctation of the aorta
You develop fainting or chest pain (these may be signs of a serious problem)

Where they differ:

US and European guidelines. The US guideline was updated in December 2025, (ACC/AHA 2025) while the ESC guideline dates from 2020, (ESC 2020) and a comparison of the earlier versions found broad agreement but important differences that affect care. (JACC comparison 2021)
When liver checks start after a Fontan. A 2020 review recommends routine monitoring from 10 years after the Fontan, (Fontan liver review 2020) while a 2023 review says liver disease may begin within the first 5 years and that earlier, yearly checks in children and teens may help. (Fontan liver review 2023)
How often to screen the liver. General liver cancer guidance uses ultrasound and a blood test every six months, but a 2020 review says there are no validated tests or criteria for liver cancer in Fontan liver disease. (Fontan liver review 2020)
Where checks happen. The ESC summary says moderate and complex defects should be followed at a specialist center, even for some checks unrelated to the heart, (ESC 2020 summary) while the NHS says some people only need regular check-ups. (NHS)

Your doctor decides what your result means for you.

Questions people ask

Do adults need heart checkups if their defect was repaired as a child?

Yes. MedlinePlus says all children and adults with congenital heart defects need regular follow-up care from a cardiologist throughout their life, even if their defect was repaired. (MedlinePlus)

Why are liver checks needed after a Fontan operation?

Reviews say virtually everyone with a Fontan circulation develops some liver congestion and scarring over time, with a risk of liver cancer that rises in the third decade after surgery. A 2023 review says there is general consensus that liver checks are needed by 10 years after the Fontan, or earlier with warning signs. (Fontan liver review 2020) (Fontan liver review 2023)

Do adults with congenital heart disease need the usual cancer screening?

Yes. A 2023 review says an American Heart Association statement recommends age-appropriate cancer screening for adults with congenital heart disease, like the general population, and notes that women with congenital heart disease had lower rates of mammograms, Pap tests and colonoscopies in one study. (Cancer review 2023)

Is blood pressure checked more often after coarctation of the aorta?

MedlinePlus says the provider checks blood pressure and pulse in the arms and legs, and that lifelong follow-up with a cardiologist is recommended after repair. A 2022 review cites a study in which people had higher blood pressure than controls as early as 5 years after repair. (MedlinePlus coarctation) (Born to age 2022)

What tests are used to follow a heart defect in adults?

The NHS lists pulse oximetry, an electrocardiogram, chest X-rays, heart scans such as an echocardiogram or MRI, blood tests for gene changes, and angiography as tests for congenital heart disease in children and adults. (NHS)