Terese Finitzo, Ph.D.
Over the past twenty years of newborn screening, we became entrenched in the idea that there was a critical difference between newborn blood spot screening (NBS) and the other newborn screens: hearing screening and critical congenital heart disease (CCHD) screening. There is no question about the serious and significant diseases identified by NBS. With blood samples obtained crib side and sent to an authorized NBS laboratory for analysis, it seems this has always inspired a special gravitas. When newborn hearing screening was introduced in the 1990s, we categorized it as a point-of-care (POC) screen. Point-of-care newborn screening describes screening with actionable results obtained in the nursery/crib side with public health oversight. When CCHD screening with pulse oximetry was added to the Recommended Universal Screening Panel (RUSP), it was placed in the same bucket. Assumptions were made that this newest POC screening would align successfully in implementation with hearing screening, although a positive screen required urgent diagnostic testing before discharge (Kemper, Kus, Ostrander et al., A framework for key considerations regarding point-of-care screening of newborns). Still, there is value to understanding what successful POC screening requires – and I (among many) have advocated learning from the hard-earned lessons of EHDI as we implemented CCHD (see my blog January 28, 2013).
This process begs the question: has the formal “definition” of point-of-care screening led us to a sense of complacency, potentially risking patient safety and newborn quality care by thinking of bloodspot screening as inherently different?
Like the public health programs themselves, screening is often “siloed” in hospital nurseries. Staff may differ. Processes and workflow may vary. An outsourced contractor conducts hearing screenings, while the hospital laboratory may be tasked with collecting and sending the NBS and the nursery staff completes pulse oximetry screenings. Amid all of this, who takes care of the baby and the family? Do they hear from three different staff, each with a different message?
Rarely is there a comprehensive system in place in a hospital to assure screening is complete and to know the next steps for each baby for each screen. How old was the newborn when the pulse oximetry screening was completed? How many times was a newborn screened for critical congenital heart disease or for hearing loss? These are important quality measures. Who collected the newborn bloodspots? When were they collected and mailed or couriered? Was the information on the filter paper card accurate, complete and actually legible?
Data shows that conservatively, in over 30% of the cases, the card does not have sufficient information to allow rapid and timely reporting to the primary care physician, even for critical conditions. In some states, these cards are also supposed to carry hearing and CCHD results, but state public health staff acknowledges that those key results are frequently missing.
It is exactly BECAUSE of what happens in the nursery that we need to start defining ALL screening as point-of-care screening. Yes, that requires expanding the current, official definition of POC, but until each step (including information capture) is well executed in the nursery, we jeopardize patient safety and the baby’s care. Solutions for the frequently chaotic newborn nursery are essential now. Public health has been taxed with improving care for all three essential newborn screenings when they cannot improve care alone – in fact, the onus is on the nursery. Hospital nurseries must become more active partners and engage in structured, continuous quality improvement of the screening and reporting system. And this means reporting to families, physicians and public health. There are a dozen simple opportunities for improvement that we can explore. None will work 100% of the time, but each should be carefully considered. We’ll explore these opportunities in future blogs and welcome your ideas and creative thinking. To quote our Colorado public health colleagues, screeners need to know they hold a baby’s life and future in their hands.