A University of Arizona College of Nursing-led research team will use a $1.9 million Department of Health and Human Services grant to lead a nationwide effort to keep babies safe from the deadly threat of necrotizing enterocolitis, known as NEC.

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Source: Photo courtesy of Rebecca Quintero

More than 3,500 babies in the United States are diagnosed with necrotizing enterocolitis each year.

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According to the NEC Society, more than 3,500 babies are diagnosed with necrotizing enterocolitis in the United States each year, and at least one baby dies from NEC every day. The gastrointestinal disease involves infection and inflammation in the gut and is one of the 10 leading causes of infant death. Black and Hispanic babies die of NEC at significantly higher rates than white babies. 

NEC is a devastating disease 

The grant, which was awarded by the Agency for Healthcare Research and Quality, a division of Department of Health and Human Services, will fund the widespread distribution of an NEC prevention bundle, NEC-Zero, to help neonatal intensive care units prevent and improve timely recognition of NEC. 

“NEC is a devastating disease that has long-term complications and lifetime impacts on babies,” said principal investigator Sheila Gephart, PhD, RN, professor and interim chair of the Advanced Nursing Practice and Science Division at the U of A College of Nursing. “The NEC-Zero prevention bundle helps clinicians in any location deliver excellent care to any baby.”

NEC-Zero, which was developed by Gephart, uses evidence-based interventions that are essential to reduce the risk of contracting NEC. Tactics include giving the baby the mother’s milk, using a feeding protocol, limiting antibiotic and antacid exposure, and using strategies for timely recognition of the condition.

Telehealth approach to help clinicians 

The telehealth approach to share it with neonatal intensive care units was co-created with Kimberly Shea, PhD, RN, a clinical professor at the College of Nursing, and program coordinator Christina Wyles, PhD, RN, who is a doctoral student and U of A fellowship award recipient.

“Our approach using telehealth is like a driver’s manual to help the real heroes – clinicians who are in NICUs helping babies and parents deal with this awful disease,” Gephart said. “Neonatal clinicians to do their very best work for every baby every day to reduce the burden of NEC in fragile infants. Our team is eager to come alongside them to support them in doing so.”

Gephart’s team will train, mentor and support health care providers on NEC-Zero using telehealth-based educational material developed in collaboration with the Arizona Telemedicine Program and the University of New Mexico’s Project ECHO. The goal is to work with as many as 30 neonatal intensive care units across the country in the next few years.

Connect with families

“One thing that is really special about the project is that we don’t just connect with NICU teams, we also encourage them to connect with families as partners,” Gephart said, adding that printed materials are available to assist families with babies who contract NEC. 

“The support of the Agency for Healthcare Research and Quality is instrumental in allowing Dr. Gephart and her team to improve the health of infants through the invaluable resources and training provided in the NEC-Zero toolkit,” said Brian Ahn, PhD, dean of the College of Nursing. “Research projects such as this are instrumental to the College of Nursing’s goal of significantly improving health care outcomes through nurse-led research, outreach and educational programs.”

The research team includes Michael Holcomb, interim director of the Arizona Telemedicine Program at the U of A College of Medicine – Tucson, Janet Rothers, PhD, director of operations at the U of A Health Sciences and BIO5 Institute Statistics Consulting Lab, Erin Umberger, MArch, of the NEC Society, Keira Sorrells, of the NICU Parent Network, Katherine Newnam, PhD, RN, of the University of Tennessee, Kelly McGlothen-Bell, PhD, RN, and Jacqueline McGrath, PhD, RN, of the University of Texas Health Science Center.