Abstract
Newborn screening is a public health program facilitated by state public health departments with the goal of improving the health of affected newborns throughout the country. Experts in the newborn screening community established a panel of eight quality indicators (QIs) to track quality practices within and across the United States newborn screening system. The indicators were developed following iterative refinement, consensus building, and evaluation. The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) implemented a national data repository in 2013 that captures the quality improvement metrics from each state. The QIs span the newborn screening process from collection of a dried blood spot through medical intervention for a screened condition. These data are collected and analyzed to support data-driven outcome assessments and tracking performance to improve the quality of the newborn screening system.
Highlights
Newborn screening (NBS) began in the United States in 1963 when four states began using blood drops collected on filter paper to detect Phenylketonuria (PKU) [1]
16 proposed measures received more than five votes each, with some measures combined into subcategories of a larger measure
Based upon the outcome of each potential quality indicators (QIs), its ability to track improvements in the newborn screening system, scientific merit, relevance to stakeholders, and feasibility of collection, a final list of ten QIs were selected by the meeting attendees as viable options for inclusion in a standardized, national set of performance measures (Table 2)
Summary
Newborn screening (NBS) began in the United States in 1963 when four states began using blood drops collected on filter paper to detect Phenylketonuria (PKU) [1]. National policies over the past several decades have safeguarded funding while the establishment of federal programs at the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) have enhanced the system by establishing quality assurance, quality improvement, evidence review, advisory committee, and technical assistance related programs [1] This simple, life-saving/quality of life enhancing test—the newborn screen—is backed by a complex system comprised of laboratory testing, follow-up, diagnosis, treatment or management, evaluation, and education [3]. Every state NBS program is made up of these six components: 1) Laboratory testing or screening, which includes the collection of dried blood spots (DBS) and screens for critical congenital heart disease and hearing loss at the birthing facility, transportation of the DBS to the NBS laboratory, testing the DBS at the NBS laboratory to identify infants at risk of one of the conditions on the state screening panel, and timely reporting out of the results to medical professionals. The data repository offers a web-based forum for states NBS programs to enter quality indicator (QI) data, to securely compare their data against aggregate national and regional reports, to view trends in data over time, and to identify areas for improvement
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