Abstract
Introduction The purpose of this article is to present the collective experiences of six federally-funded critical congenital heart disease (CCHD) newborn screening implementation projects to assist federal and state policy makers and public health to implement CCHD screening. Methods A qualitative assessment and summary from six demonstration project grantees and other state representatives involved in the implementation of CCHD screening programs are presented in the following areas: legislation, provider and family education, screening algorithms and interpretation, data collection and quality improvement, telemedicine, home and rural births, and neonatal intensive care unit populations. Results The most common challenges to implementation include: lack of uniform legislative and statutory mandates for screening programs, lack of funding/resources, difficulty in screening algorithm interpretation, limited availability of pediatric echocardiography, and integrating data collection and reporting with existing newborn screening systems. Identified solutions include: programs should consider integrating third party insurers and other partners early in the legislative/statutory process; development of visual tools and language modification to assist in the interpretation of algorithms, training programs for adult sonographers to perform neonatal echocardiography, building upon existing newborn screening systems, and using automated data transfer mechanisms. Discussion Continued and expanded surveillance, research, prevention and education efforts are needed to inform screening programs, with an aim to reduce morbidity, mortality and other adverse consequences for individuals and families affected by CCHD.
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Acknowledgements
This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant numbers H46MC24058 (Michigan Department of Community Health), H46MC24060 (University of New Hampshire), H46MC24059 (New Jersey Department of Health and Senior Services), H46MC24061 (Utah Department of Health), H46MC24062 (Virginia Department of Health), and H46MC24057 (Board of Regents of the University of Wisconsin System). Each project was awarded $900,000, with 0% financed with nongovernmental sources. Additional funding for this project was supported by HRSA Cooperative Agreement #U22MC24078 (Association of Public Health Laboratories, NewSTEPs).
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The views and conclusions expressed in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention, HRSA, or HHS.
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The original version of this article is revised. “The original version of this article listed one of the co-author name as Kim Naarden Van Braun. It should be Kim Van Naarden Braun.”
An erratum to this article is available at http://dx.doi.org/10.1007/s10995-017-2295-y.
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McClain, M.R., Hokanson, J.S., Grazel, R. et al. Critical Congenital Heart Disease Newborn Screening Implementation: Lessons Learned. Matern Child Health J 21, 1240–1249 (2017). https://doi.org/10.1007/s10995-017-2273-4
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DOI: https://doi.org/10.1007/s10995-017-2273-4