Abstract
A national approach to screening for critical congenital heart disease (CCHD) using pulse oximetry was undertaken in the United States. Following the scientific studies that laid the groundwork for the addition of CCHD screening to the U.S. Recommended Uniform Screening Panel (RUSP) and endorsement by professional societies, advocates including physicians, nurses, parents, medical associations, and newborn screening interest groups were able to successfully pass laws requiring the screen on a state by state basis. Public health involvement and screening requirements vary by state. However, a common algorithm, education, and implementation strategies were shared nationally as well as CCHD toolkits to aid in the implementation in hospitals. Health Resources & Services Administration (HRSA) grants to pilot states encouraged the development of a public health infrastructure around screening, data collection, and quality measures. The formation of a CCHD NewSTEPs technical advisory work group provided a systematic way to tackle challenges and share best practices by hosting monthly meetings and webinars. CCHD screening is now required in 48 states, with over 98% of U.S. births being screened for CCHD using pulse oximetry. A standard protocol has been implemented in most states. While the challenges related to screening special populations and quantifying screening outcomes through the creation of a national data repository remain; universal implementation is nearly complete.
Highlights
Critical congenital heart disease (CCHD) screening using pulse oximetry is a point of care newborn screen that relies on the detection of low blood oxygen levels to identify infants who may have CCHD or other life threatening neonatal conditions
During a follow-up Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) meeting in August of 2017, committee members discussed whether CCHD screening may be one of the most successful and impactful additions to the Recommended Uniform Screening Panel (RUSP), in its ability to gain the attention and buy-in of the general public, and publicity in the form of newspaper articles and news coverage
Outcomes analysis to assess the national impact of requiring CCHD screening in the U.S is currently underway and may rely heavily on administrative data, birth defect and death registry data in the absence of population level CCHD outcomes reporting, since no such robust U.S clinical dataset currently exists
Summary
Critical congenital heart disease (CCHD) screening using pulse oximetry is a point of care newborn screen that relies on the detection of low blood oxygen levels to identify infants who may have CCHD or other life threatening neonatal conditions. The primary targets for CCHD screening were identified through expert consensus in 2011 The list included those seven lesions most likely to be identified using pulse oximetry: hypoplastic left heart syndrome, pulmonary atresia, tetralogy of Fallot, total anomalous pulmonary venous return, transposition of the great arteries, tricuspid atresia, and truncus arteriosus [5]. This list of core conditions was expanded in 2016, this time by an expert panel convened by the Centers for Disease Control (CDC) and the American Academy of Pediatrics (AAP) to include coarctation of the aorta, double-outlet right ventricle, Ebstein’s anomaly, interrupted aortic arch, single ventricle, and other critical cyanotic lesions not specified. The goal of this article is to give an overview and insight into how the U.S was able to achieve systematic implementation of CCHD screening using pulse oximetry including a nationally endorsed screening algorithm, centralized resources coordinated at the state and federal government levels, shared educational strategies, and toolkits; moving within five years from screening in only a few hospitals, mainly associated with research studies with no state requirements, to nearly universal implementation in all but two states
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