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New Study Findings: Assessment of Current Practices and Feasibility of Routine Screening for Critical Congenital Heart Defects - Georgia 2012

Doctor examining an infant

The Morbidity and Mortality Weekly Report has published this new study “Assessment of Current Practices and Feasibility of Routine Screening for Critical Congenital Heart Defects in Georgia.” You can read the article here.

Main Finding from this Study

About half of Georgia’s birthing hospitals are currently screening or had plans to start screening newborn babies for critical congenital heart defects (CCHD) by the end of 2012.  Currently, Georgia does not require newborn screening for CCHD. Therefore, the choice to screen newborns for CCHD lies with each hospital. Barriers to screening included:

  • No clear follow-up plan for babies who screen positive for CCHD
  • Uncertainty about reporting results to the public health department
  • Concern about the costs to begin and maintain screening activities

Many hospitals lacked the resources to confirm a CCHD diagnosis at their own hospital. Among hospitals that were already screening for CCHD, screening practices varied.

About this Study

Basics about Critical Congenital Heart Defects

What are critical congenital heart defects?
Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1% of―or about 40,000―births per year.  About 1 in 4 babies born with a heart defect has a critical congenital heart defect (CCHD, also known as critical congenital heart disease).1 Babies with a CCHD need surgery or other procedures within the first year of life.

How can newborn screening help babies with CCHD?
Some babies born with a CCHD appear healthy at first and can be sent home before their heart defect is detected. These babies are at risk of having serious complications within the first few days or weeks of life and often require emergency care. Newborn screening can identify some of these babies so they can receive care and treatment that can help prevent disability or early death.

Newborn screening for CCHD involves a simple bedside test to determine the amount of oxygen in a baby’s blood. Low levels of oxygen in the blood can be a sign of CCHD. CCHD screening has begun in some states, and laws requiring this screening have been proposed or passed in other states. You can see what is happening in your state here.

Why is this study important?

This study showed that screening for CCHD has already begun in many hospitals in Georgia, a state without a mandate for newborn screening for CCHD. Differences in screening practices between hospitals could be lessened with more education. This study also shows that hospitals need to work together to ensure that all infants with a possible CCHD get needed follow-up care and diagnosis.

What are the study results?

Researchers administered two surveys to birthing hospitals in Georgia. They also visited five hospitals and observed screening activities. About half of Georgia hospitals were currently screening for CCHD or planning to start screening by the end of 2012.

  • Barriers to screening included:
    • No clear follow-up plan for babies who screen positive for CCHD
    • Uncertainty about reporting results to the public health department
    • Concern about the costs to begin and maintain screening activities
  • About 1 in 3 hospitals were unable to perform echocardiography, a test used to confirm the presence of a CCHD, at their hospital
  • About half needed to transfer infants with a positive CCHD screen to another hospital for diagnosis
  • Of the hospitals that were screening, about 1 in 3 were following the screening protocol endorsed by the American Academy of Pediatrics

Heart Defects: CDC’s Activities

Centers for Disease Control and Prevention (CDC) works to identify causes of CHDs and ways to prevent them. We do this through:

  1. Surveillance or disease tracking:
    1. State programs: CDC funds and coordinates the Metropolitan Atlanta Congenital Defects Program (MACDP).  CDC also funds 14 population-based state tracking programs. Birth defects tracking systems are vital to help us find out where and when birth defects occur and whom they affect.
    2. Adolescents and adults: CDC recently started 3 projects to track congenital heart defects among adolescents and adults in order to learn about their health issues and needs across the lifespan.
  2. Research: CDC funds a large study of birth defects called the National Birth Defects Prevention Study. This study is working to identify risk factors for birth defects, including heart defects.
  3. Collaboration:
    1. CDC is assessing states’ needs for help with CCHD screening and reporting of screening results. CDC worked with New Jersey and Georgia to assess their ability to track CCHD screening. CDC is also helping states and hospitals to better understand how much hospitals spend for each baby screened.
    2. CDC promotes collaboration between birth defects tracking programs and newborn screening programs for CCHD screening activities. State birth defects programs collect data on CHDs and could help evaluate the effectiveness of screening by looking at false positives (babies who failed the CCHD screening but do not actually have a CCHD after further evaluation) and false negatives (babies who passed the screen suggesting there was no CCHD but actually did have a CCHD).
    3. CDC provides technical assistance to the Congenital Heart Public Health Consortium and to states receiving funding from the Health Resources and Services Administration (HRSA) for CCHD screening activities.

Reference:

1. Oster M, Lee K, Honein M, Colarusso T, Shin M, Correa A. Temporal Trends in Survival for Infants with Critical Congenital Heart Defects. Pediatrics. 2013. (In Press).

Key Findings Reference
  • CDC. Assessment of Current Practices and Feasibility of Routine Screening for Critical Congenital Heart Defects - Georgia, 2012. Morbidity and Mortality Weekly Report. 2013;62(15):288-91.
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