Monitoring

Patients with surgically corrected Tetralogy of Fallot (TOF) should be routinely evaluated by a pediatric cardiologist. Neurodevelopmental follow-up is routinely indicated.[52] Research shows congenital heart defects like TOF lead to specific neurodevelopmental issues across cognitive, behavioral, and social-emotional areas. Early intervention and continuous support are crucial to meet these complex needs. It is vital to identify these challenges early on and develop tailored care plans for each patient, adapting to their changing neurodevelopmental requirements.[53]​​

Joint guidelines from the American College of Cardiology and American Heart Association recommend that adult patients with repaired TOF should have routine follow-up with a cardiologist who has expertise in adults with congenital heart disease (CHD) with recommended visit frequency and testing increasing based on the individual patients’ physiologic stage and symptoms. They further advise that echocardiographic exams and/or magnetic resonance imaging (MRI) be performed on these patients by staff with expertise in adult CHD.[39] Guidelines from the European Society of Cardiology (ESC) similarly recommend that adults with TOF be followed up in a specialized adult CHD center.[41]

Preconception counseling and management during pregnancy is especially important for women with repaired TOF.[54]

Echocardiograms to evaluate right ventricular (RV) function and the progression of pulmonary stenosis or regurgitation should be performed every 1 to 5 years. The timing is patient specific, and patients with significant progressive RV dilation, pulmonary stenosis or regurgitation, or symptoms may require at least yearly scans.

Cardiac MRI or computed tomography is an additional tool increasingly used to evaluate RV volume and function.[38] MRI allows for accurate 3-dimensional measurements of RV volumes and is increasingly being used to determine timing of surgical pulmonary valve replacement.[26] Often a multimodality approach to imaging tailored to individual patient-specific considerations will need to be considered under the guidance of a congenital cardiologist.[26] ESC guidelines recommend performing cardiac MRI at regular intervals according to TOF pathology.[41]

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