brief

Surveillance, Screening, and Evaluation

A spotlight on the Scientific Statement

Sood et al's 2024 Scientific Statement describes a differentiated approach to neurodevelopmental monitoring and assessment of patients with CHDs depending on a process of risk stratification. By following the described practices, medical professionals can increase the early and accurate identification of.neurodevelopmental delays and disabilities, and target resources efficiently.

2 min read

In this section

Stratifying by Risk Category 1. Process for High-Risk Patients 2. Process for Lower-Risk Patients Targeting Resources, Meeting Needs

Stratifying by Risk Category

Before hospital discharge and then periodically over the course of development, medical professionals should classify children with congenital heart defects according to their level of risk. Then, they can monitor and measure neurodevelopment differentially based on the assigned risk category.

Patients at high risk are those who:

had a cardiac surgery with cardiopulmonary bypass in infancy, or
have a history of chronic cyanosis, or
had an intervention or hospitalization in infancy due to secondary effects of a heart defect and also have at least one additional risk factor as defined in the Scientific Statement

All other patients with a heart defect are considered at lower risk of cardiac neurodevelopmental delay or disability, although they may still be at high risk of neurodevelopmental delay or disability associated with a non-cardiac condition.

1. Process for High-Risk Patients

Patients at high risk of cardiac neurodevelopmental delay or disability should:

be referred for a developmental evaluation by a qualified clinician
be referred to Early Intervention (EI) if they are ages 0-35 months
be referred for further medical or allied health evaluation(s) as needed, such as:

genetic testing
neurological evaluation
physical therapy evaluation
occupational therapy evaluation
audiological evaluation
speech and language evaluation
pulmonary evaluation
gastroenterology evaluation
otolaryngology evaluation

Links on this page are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.

2. Process for Lower-Risk Patients

Children who are at lower risk of cardiac neurodevelopmental delays or disabilities should undergo regular screening and surveillance, as recommended by the American Academy of Pediatrics. Given the elevated risk of later-emerging developmental concerns in the congenital heart defect population, developmental surveillance and screening should extend through development, and not be restricted to early childhood.

Targeting Resources, Meeting Needs

When neurodevelopmental care resources are appropriately targeted to patients at highest need, medical professionals have an opportunity to make the greatest possible impact in promoting the wellbeing of their patients. All patients are monitored, risk categories are adjusted dynamically and responsively, and high-risk patients receive thorough evaluations and the promise of well-timed and appropriate intervention.

This content was reviewed by the staff of the Cardiac Neurodevelopmental Program.

References

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