title: Critical Congenital Heart Disease Newborn Screening Implementation: Lessons Learned.
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.
authors.affiliation: Institute on Disability, University of New Hampshire, 10 West Edge Drive, Suite 101, Durham, NH, 03824, USA. Monica.McClain@unh.edu.
authors.forename: Monica R
authors.initials: MR
authors.lastname: McClain
authors.affiliation: University of Wisconsin-Madison, Madison, WI, USA.
authors.forename: John S
authors.initials: JS
authors.lastname: Hokanson
authors.affiliation: New Jersey Department of Health, Trenton, NJ, USA.
authors.forename: Regina
authors.initials: R
authors.lastname: Grazel
authors.affiliation: Centers for Disease Control and Prevention, Atlanta, GA, USA.
authors.forename: Kim
authors.initials: K
authors.lastname: Van Naarden Braun
authors.affiliation: New Jersey Department of Health, Trenton, NJ, USA.
authors.forename: Lorraine F
authors.initials: LF
authors.lastname: Garg
authors.affiliation: Virginia Department of Health, Richmond, VA, USA.
authors.forename: Michelle R
authors.initials: MR
authors.lastname: Morris
authors.affiliation: Virginia Department of Health, Richmond, VA, USA.
authors.forename: Kathleen
authors.initials: K
authors.lastname: Moline
authors.affiliation: Michigan Department of Community Health, Lansing, ME, USA.
authors.forename: Keri
authors.initials: K
authors.lastname: Urquhart
authors.affiliation: Utah Department of Health, Salt Lake City, UT, USA.
authors.forename: Amy
authors.initials: A
authors.lastname: Nance
authors.affiliation: Utah Department of Health, Salt Lake City, UT, USA.
authors.forename: Harper
authors.initials: H
authors.lastname: Randall
authors.affiliation: University of Colorado Anschutz Medical Center, Denver, CO, USA.
authors.forename: Marci K
authors.initials: MK
authors.lastname: Sontag
mesh_terms: D005260:Female; D006284:Health Plan Implementation / Q000458:organization & administration*; D006297:Health Services Accessibility; D006330:Heart Defects, Congenital / Q000175:diagnosis*; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000379:methods* / Q000458:organization & administration*; D017410:Practice Guidelines as Topic / Q000592:standards; D011247:Pregnancy; D036301:Qualitative Research; D058996:Quality Improvement; D014481:United States
keywords: Critical congenital heart disease; Newborn screening; Public health