142nd APHA Annual Meeting and Exposition

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Preliminary findings of a regional approach to critical congenital heart disease newborn screening implementation

142nd APHA Annual Meeting and Exposition (November 15 - November 19, 2014): http://www.apha.org/events-and-meetings/annual
Monday, November 17, 2014

Monica McClain, PhD , Health Management and Policy, and Institute on Disability, University of New Hampshire, Durham, NH
Introduction: Pulse oximetry, as a screening test to detect critical congenital heart disease (CCHD), has been recommended for universal newborn screening. While each U.S. state maintains its own public health newborn screening program and determines for which disorders it will screen, this project examines a regional approach for five New England states to support the development, dissemination and validation of screening protocols and newborn screening infrastructure needs for CCHD screening. This study presents results from the halfway point of a three year project.

Methods: A coordinating council comprising representatives from public health, pediatrics, pediatric cardiology, health educators, March of Dimes, family advocates, perinatal nurses and screening was formed to guide and evaluate this project. Nine birthing facilities were recruited to implement CCHD screening and collect and report screening results.

Results: States are in various stages of implementing CCHD screening, and differences in public health authority to oversee programs exist. A Tier 2 educational brochure has been developed for parents of a baby who receives a positive screen. To date, 16,024 babies have been screened; there have been 11 with positive screens (7 per 10,000) and 2 have been diagnosed with CCHD (1.2 per 10,000).      

Discussion: Differences among states in the way disorders are added to their screening panel, and the wording of legislation has impeded public oversight of CCHD newborn screening programs. A regional approach to implementing CCHD screening allows the sharing of resources and expertise across states.

Learning Areas:

Administration, management, leadership
Conduct evaluation related to programs, research, and other areas of practice
Epidemiology
Ethics, professional and legal requirements
Program planning

Learning Objectives:
Describe the process for adding a condition to the Recommended Uniform Screening Panel. List benefits and challenges to a regional approach in implementing critical congenital heart disease newborn screening.

Keyword(s): Maternal and Child Health, Policy/Policy Development

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the principal investigator of a federally funded grant focusing on the implementation of critical congenital heart disease newborn screening in five New England states. Among my scientific interests have been the evaluation of population-based screening tests and genetic testing.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

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