Care of the Adolescent with Congenital Heart Disease: Beyond the Lesion

Erin A. Paul, Joseph Truglio, Joseph Mahgerefteh, Ali N. Zaidi

Research output: Contribution to journalArticlepeer-review


• Patients with congenital heart disease (CHD) are at increased risk for mental health disorders and neurodevelopmental impairments. (13)(14)(15)(16)(17) • Regular neurodevelopmental screening and evaluation are recommended throughout childhood and adolescence. (Based on expert consensus) (13)(18) • Adolescents with CHD, particularly those with complex and cyanotic lesions, may experience differences in sexual development, including later onset of puberty (28) or infrequent, frequent, or heavy menstruation. (Based on some research evidence and observational studies) (29) • Other than patients with significant valvular disease, decompensated heart failure, or uncontrolled arrhythmia, some degree of sexual activity can be achieved for almost all patients with CHD. (Based on expert consensus) • Contraception and family planning decisions for individuals with CHD should be made in partnership between the clinician and patient taking into account patient goals, risk of pregnancy (based in part on World Health Organization risk stratification guidelines), and risk and effectiveness of contraceptive options. (Based on some research evidence and expert consensus) (31) • For patients with CHD requiring gender-affirming medications, clinicians should pay particular attention to the use of estrogen in patients at increased risk for thrombus, androgen suppression in patients at risk for QTc prolongation, and spironolactone in patients at risk for hyperkalemia. (Based on some research evidence) (30) • Patients with CHD are at higher risk for cardiovascular disease compared with the general population. (38) This population also has increased prevalence of obesity, hypertension, and diabetes. (Based on meta-analysis of cohort studies) (39)(40) • Current guidelines recommend performing blood pressure measurements in patients with repaired or unrepaired CHD at every health supervision visit beginning in infancy. (42) • All children should have universal lipid screening between ages 9 and 11 years and again between ages 17 and 21 years. This screening may be performed as early as age 2 years in patients with risk factors such as hypertension or chronic kidney disease. (Based on expert consensus) (43) • Exercise participation should be tailored to a patient's CHD history. (Based on expert consensus) (44) • Transition and transfer of care is a complex process that requires planning and coordination between pediatric and adult health-care matrices. • Inadequate transition and transfer of care has been linked to increasing morbidity and mortality for patients, adverse effects on their families, and a burden on the health-care delivery systems. (60) • It is recommended that transition programs be tailored to individual patient needs, be age-appropriate, and involve formal introduction to an adult CHD physician.

Original languageEnglish
Pages (from-to)311-322
Number of pages12
JournalPediatrics in Review
Issue number6
StatePublished - 1 Jun 2023


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