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Association of US State Implementation of Newborn Screening Policies for Critical Congenital Heart Disease With Early Infant Cardiac Deaths

Educational Objective
To understand the benefits of state newborn screening policies for critical congenital heart disease.
1 Credit CME
Key Points

Question  Were mandatory state newborn screening policies for critical congenital heart disease using pulse oximetry associated with a decrease in infant cardiac deaths?

Findings  In this observational study conducted between 2007 and 2013 including approximately 27 million US births, state adoption of a mandatory screening policy was associated with a statistically significant decline of 33.4% in the death rate due to critical congenital heart disease compared with states without such policies.

Meaning  Mandatory screening policies were associated with a reduction in infant deaths due to critical congenital heart disease.

Abstract

Importance  In 2011, critical congenital heart disease was added to the US Recommended Uniform Screening Panel for newborns, but whether state implementation of screening policies has been associated with infant death rates is unknown.

Objective  To assess whether there was an association between implementation of state newborn screening policies for critical congenital heart disease and infant death rates.

Design, Setting, and Participants  Observational study with group-level analyses. A difference-in-differences analysis was conducted using the National Center for Health Statistics’ period linked birth/infant death data set files for 2007-2013 for 26 546 503 US births through June 30, 2013, aggregated by month and state of birth.

Exposures  State policies were classified as mandatory or nonmandatory (including voluntary policies and mandates that were not yet implemented). As of June 1, 2013, 8 states had implemented mandatory screening policies, 5 states had voluntary screening policies, and 9 states had adopted but not yet implemented mandates.

Main Outcomes and Measures  Numbers of early infant deaths (between 24 hours and 6 months of age) coded for critical congenital heart disease or other/unspecified congenital cardiac causes for each state-month birth cohort.

Results  Between 2007 and 2013, there were 2734 deaths due to critical congenital heart disease and 3967 deaths due to other/unspecified causes. Critical congenital heart disease death rates in states with mandatory screening policies were 8.0 (95% CI, 5.4-10.6) per 100 000 births (n = 37) in 2007 and 6.4 (95% CI, 2.9-9.9) per 100 000 births (n = 13) in 2013 (for births by the end of June); for other/unspecified cardiac causes, death rates were 11.7 (95% CI, 8.6-14.8) per 100 000 births in 2007 (n = 54) and 10.3 (95% CI, 5.9-14.8) per 100 000 births (n = 21) in 2013. Early infant deaths from critical congenital heart disease through December 31, 2013, decreased by 33.4% (95% CI, 10.6%-50.3%), with an absolute decline of 3.9 (95% CI, 3.6-4.1) deaths per 100 000 births after states implemented mandatory screening compared with prior periods and states without screening policies. Early infant deaths from other/unspecified cardiac causes declined by 21.4% (95% CI, 6.9%-33.7%), with an absolute decline of 3.5 (95% CI, 3.2-3.8) deaths per 100 000 births. No significant decrease was associated with nonmandatory screening policies.

Conclusions and Relevance  Statewide implementation of mandatory policies for newborn screening for critical congenital heart disease was associated with a significant decrease in infant cardiac deaths between 2007 and 2013 compared with states without these policies.

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Article Information

Corresponding Author: Rahi Abouk, PhD, Cotsakos College of Business, William Paterson University, 300 Pompton Rd, Wayne, NJ 07470 (aboukr@wpunj.edu).

Correction: This article was corrected on February 6, 2018, for an error in the data collection period in the abstract; it was corrected on September 25, 2018, to adjust Table 2, the Results, and the Limitations sections with regard to data from the 2013 birth cohort.

Accepted for Publication: November 2, 2017.

Author Contributions: Dr Abouk had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: All authors.

Acquisition, analysis, or interpretation of data: Abouk, Ailes, Oster.

Drafting of the manuscript: Abouk, Grosse.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Abouk, Grosse, Ailes.

Administrative, technical, or material support: Abouk, Ailes, Oster.

Supervision: Abouk, Oster.

Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Dr Grosse reports participation in a study tour organized by the Newborn Foundation. No other disclosures are reported.

Disclaimer: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the CDC.

Additional Contributions: We thank Kim Van Naarden Braun, PhD, formerly of the CDC and the New Jersey Department of Health; Jeff Hudson, MA, of the American Academy of Pediatrics; Jill Glidewell, MSN, of the CDC; and Marci Sontag, PhD, of the University of Colorado School of Public Health for helping to clarify effective dates of screening policies. We also thank Tiffany Colarusso, MD, MPH, of the CDC; Andrew Ewer, MD, of the University of Birmingham; Suzanne Gilboa, PhD, of the CDC; John Iskander, MD, MPH, of the CDC; Cora Peterson, PhD, of the CDC; Annamarie Saarinen, MA, of the Newborn Foundation; and Phoebe Thorpe, MD, MPH, of the CDC for helpful comments. None of those individuals received compensation for their assistance.

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