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.

Critical Congenital Heart Disease Screening Using Pulse Oximetry: Achieving a National Approach to Screening, Education and Implementation in the United States

“…HRSA responded by funding six CCHD state demonstration projects over a three year period, specifically to support the validation and dissemination of CCHD screening protocols and for the development of infrastructure around point-of-care screening for CCHD [23]. The state programs chosen were: Michigan, New Jersey, Utah, Virginia, Wisconsin and a consortium of five New England states (Maine, New Hampshire, Vermont, Rhode Island, and Connecticut) [23].…”

“…The state programs chosen were: Michigan, New Jersey, Utah, Virginia, Wisconsin and a consortium of five New England states (Maine, New Hampshire, Vermont, Rhode Island, and Connecticut) [23]. Shortly after the grants to the states were awarded, a third stakeholders meeting took place in Washington, D.C. in September of 2012 to kick-off and coordinate state efforts.…”

“…Shortly after the grants to the states were awarded, a third stakeholders meeting took place in Washington, D.C. in September of 2012 to kick-off and coordinate state efforts. Initial lessons learned following the completion of the grant period were published by the grantees in 2017 [23].…”

“…In 2013, NewSTEPs, which continues to function as a part of a partnership between the Association of Public Health Laboratories (APHL) and the Colorado School of Public Health, began hosting monthly CCHD technical assistance webinars to assist in the dissemination of best practices and working solutions to commonly identified challenges to screening [23]. Early topics included: educational resources available for parents and screeners, data collection including electronic reporting resources, defining roles and resources from a public health perspective, special populations, and how to address cost/equipment issues [30].…”

“…NewSTEPs, in partnership with the Pediatric Congenital Heart Association, also brought together the HRSA grantees and other leaders in CCHD for an in-person meeting in February 2014. The purpose of this meeting was to discuss the current status of CCHD screening in the U.S. and to share ideas and provide guidance for state screening programs involved in all stages of implementation [23].…”