Critical Congenital Heart Disease Newborn Screening Implementation: Lessons Learned

• Published in: Maternal and child health journal Vol. 21; no. 6; pp. 1240 - 1249
• Main Authors: McClain, Monica R., Hokanson, John S., Grazel, Regina, Van Naarden Braun, Kim, Garg, Lorraine F., Morris, Michelle R., Moline, Kathleen, Urquhart, Keri, Nance, Amy, Randall, Harper, Sontag, Marci K.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.06.2017; Springer; Springer Nature B.V
• Subjects: Algorithms; Analysis; Cardiovascular disease; Cardiovascular diseases; Congenital diseases; Congenital heart defects; Data collection; Diagnosis; Education; Female; From the Field; Gynecology; Health Plan Implementation - organization & administration; Health Services Accessibility; Heart Defects, Congenital - diagnosis; Humans; Infant mortality; Infant, Newborn; Legislation; Maternal and Child Health; Medical screening; Medicine; Medicine & Public Health; Neonatal screening; Neonatal Screening - methods; Neonatal Screening - organization & administration; Pediatrics; Population Economics; Practice Guidelines as Topic - standards; Pregnancy; Prevention; Public Health; Qualitative Research; Quality Improvement; Risk factors; Sociology; United States; United States; Critical congenital heart disease; Newborn screening; Public health
• ISSN: 1092-7875; 1573-6628
• DOI: 10.1007/s10995-017-2273-4

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.