Pulse Ox Screening for Congenital Heart Disease in Newborns

Stephen Kaine, MD


May 31, 2016

Editorial Collaboration

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Editor's Note:
This interview provides a summary of a lecture on the topic of pulse oximetry screening that Stephen Kaine, MD, presented at a recent pediatric cardiology conference.

What did you present about pulse oximetry screening at Cardiology 2016, the 19th Annual Update on Pediatric and Congenital Cardiovascular Disease, which was held in Orlando, Florida, in February?

Stephen Kaine, MD: My presentation focused on the use of pulse oximetry in the newborn to screen for critical congenital heart disease (CCHD). It's been almost 5 years since then-Secretary of Health and Human Services Kathleen Sebelius recommended that pulse oximetry screening be added to the uniform screening panel for newborns. My talk was a review of how that implementation process has taken place.

Pulse oximetry screening for CCHD in the newborn nursery is now almost universal in the United States. Before oximetry screening, about 20% of newborns with CCHD left the hospital with undiagnosed heart defects. Now that number is much, much smaller.

What has surprised you about the practice of pulse oximetry screening for CCHD?

Dr Kaine: I was surprised about the variety of ways in which states implemented pulse oximetry screening. Most states (approximately 80%) approached it as a legislative issue, working with their state legislatures to develop legislative mandates. The remainder of states approached oximetry screening through regulation, adding pulse oximetry screening to their standard newborn screening panels.

The other thing that surprised me is that although the implementation of screening has been fairly universal, reporting has not. We have a wide variety of reporting structures. This is important, because any time we implement a new evaluation or treatment, we would like to know the outcomes.

And although we have a very solid impression that lives are being saved, the exact number of babies with CCHD whose lives have been saved through this initiative is not known. States have chosen to report the information sometimes in aggregate, and sometimes not at all. Only a few states report the results of oximetry screening on an individual-patient level. So we still have some challenges to get the most benefit from pulse oximetry screening for these patients.

What is next for pulse oximetry screening of the newborn?

Dr Kaine: At Children's Mercy Hospital, the next step is to continue to work with the state departments of health in Kansas and Missouri. Kansas chose not to impose a legislative solution to pulse oximetry screening, but instead to make it a quality initiative. We worked with them over the past 2 years on teaching materials for hospitals.

In that period of time (from 2014 until now), the number of Kansas birth facilities that screen newborns with pulse oximetry has increased from about 35% to 100%. And the number of babies screened in Kansas has increased from about 80% to almost 99%. Kansas is unique because there was no legislative mandate. We approached the Kansas Department of Health and Environment with this and were able to advise them on how to implement reporting. The Kansas Department of Health and Environment has added pulse oximetry screening results to the electronic birth certificate, and they now have a tracking system. So not only will we have aggregate data, but we will have individual patient-level data so that the outcomes of oximetry screening will be known.

We need to know what happens to babies who have positive screening results. We want to know whether these infants received appropriate evaluation. If their CCHD is confirmed, and they require treatment, what happens to those babies? Not every baby who has a positive screen has CCHD. We want to know why those babies had positive screening results. Sometimes important medical conditions other than CCHD are detected through pulse oximetry screening.

What does pulse oximetry screening mean for clinicians?

Dr Kaine: We have been gratified that pulse oximetry screening has been taken up and is essentially universal. It has meant that many fewer critically ill babies are coming to the hospital with undiagnosed heart defects. Each year, 40,000 to 50,000 infants are born with congenital heart disease. Of that group, approximately 10,000 infants have CCHD, meaning that they have a heart defect that is serious enough to require treatment in the first year of life. Before 2011, from 2500 to 3000 babies left the newborn hospital with undiagnosed CCHD, and then came back to the hospital, sometimes in very serious condition. That makes management with surgery or catheter procedures much more difficult and much more risky. The outcomes of treatment for congenital heart disease when the diagnosis is delayed are significantly worse than when a timely diagnosis is made. Pulse oximetry screening enables an early diagnosis so that infants can undergo timely and successful treatment.

What should clinicians tell parents about pulse oximetry screening?

Dr Kaine: There is a new evaluation option for their children. Infants no longer will be discharged from the hospital with undetected heart defects. Fortunately, most, if not all, hospitals in Kansas and Missouri are now screening. Families don't need to worry about whether a proper evaluation will be conducted.