Inside Pediatrics, Neonatology

Neonatal Consortium Advances Care for Patients with Rare Diagnoses

The Children’s Hospitals Neonatal Consortium (CHNC) works to improve patient outcomes. 

If you’re trying to make quality improvements, a good place to start is in the past. Historical data can hold the key to understanding what works, what doesn’t and what holds promise. But searching for answers in a small sample can be like panning for gold in a puddle. You need a stream of data to draw out the nuggets.

Prior to 2006, Children’s of Alabama was similar to most freestanding Children’s Hospitals: treating some of the sickest patients with unique conditions that didn’t always have textbook answers. Children’s neonatologist Tim Coghill, MD, was in the same position as his peers across North America; they knew there could be knowledge in numbers. With colleagues at 16 other Children’s Hospitals, he co-founded the Children’s Hospitals Neonatal Consortium (CHNC), an international group of level IV neonatal intensive care units (NICUs) that work together to improve patient outcomes. 

Now in its 16th year, the group consists of more than 40 top-rated Children’s Hospitals in the U.S. and Canada. All contribute to the Children’s Hospitals Neonatal Database, which allows them to compare a larger number of outcomes for complex patients and rare diagnoses and find the “gold” in their shared data.

Children’s neonatologist Allison Black, MD observes that, “We receive patients with rare diagnoses that you may only take care of once every 10 years. When you can pool the data on these patients with other centers, you can see if certain treatments and characteristics are associated with better outcomes and help formulate the best practices.”

One of the primary ways the CHNC establishes those best practices is through Collaborative Initiatives for Quality Improvement (CIQI) projects, such as STEPP-IN, a program aimed at improving neonatal surgical outcomes. The STEPP-IN initiative developed a standardized handoff and workflow process for patients being transported to and from the operating room. Through this process, the stability of infants during the time surrounding surgical procedures was greatly improved. Another quality improvement initiative, Erase Post-Op Pain, included an algorithm for managing and preventing pain after surgery in neonates. After initiation of these algorithms, the frequence of uncontrolled post-operative pain episodes following procedures decreased to less than 6% at Children’s of Alabama, a best in class outcome.  The CIQI projects often include clinicians, caregivers and specialists from various departments and disciplines throughout the hospital. Through the collaborations in these initiatives, there have been other permanent interdisciplinary teams established, such as the neurodevelopment care team, palliative care and infant feeding teams at Children’s. “Our involvement with the CHNC has helped foster a culture of collaboration, and this has helped us strive for a more well-rounded, multidisciplinary model when caring for our patients and supporting their families,” Black said.

Children’s involvement in the CHNC has provided the opportunity to help others seeking to improve care and create a collaborative environment in their units, as well. Hannah Hightower, M.D., presented at a national seminar highlighting her success with improving communications during high-stakes situations through a project involving debriefing after code events. In the past year and a half, Coghill and Black participated in two national workshops providing education to pediatric providers on difficult discussions and end-of-life decision making with families in the NICU. All three of these physicians have contributed to published manuscripts in the past year and have more in production through their involvement and collaborations in the CHNC. 

Outside of the QI projects, CHNC members also participate in an ever-expanding list of focus groups. Focus groups Children’s of Alabama participates in include:

  • Resuscitation
  • Discharge planning
  • Gastroschisis
  • Palliative Care and Ethics (PACE)
  • Neurosurgery
  • Micrognathia
  • Kidney and Urology
  • Necrotizing Enterocolitis
  • Genomics

These focus groups, said Black, “allow us to work together to develop the best practices for specific diseases.”  The greatest benefit of the CHNC is that patients get access to care that is constantly improving. “Through our involvement with the CHNC, we are lucky to be on the forefront of deciding how to best care for complex patients,” said Black. “We are constantly striving to gain knowledge and improve the care of our unique patient population, and in turn, our patients all benefit from this collective knowledge.”

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