UI researchers lead NIH team in updating online tool for extremely preterm infant outcomes

Where an extremely preterm infant is born and how the infant is cared for play a major role in how well that infant does, according to researchers from University of Iowa Stead Family Children’s Hospital.

“Outcomes are not just due to things that are intrinsic to the baby, but they are a combination of how the baby is and how we treat him or her,” says Matthew Rysavy, MD, PhD, a fellow with the UI Stead Family Department of Pediatrics in the Carver College of Medicine.

Rysavy is lead investigator of an update and evaluation of a tool describing extremely preterm birth outcomes maintained by the Eunice Kennedy Shriver National Institutes of Child Health and Human Development Neonatal Research Network. He and his collaborators’ findings are published in JAMA Pediatrics on Monday, March 2, 2020.

Rysavy and a group of researchers funded by the National Institutes of Health have updated a widely used online tool published in 2008 to provide information for families and clinicians on outcomes for extremely premature newborns using information available at the time of birth.

For the update, Rysavy and team incorporated data from the Neonatal Research Network as well as the Vermont Oxford Network, a health care collaborative aimed at improving the efficiency and effectiveness of medical care for newborns that maintains data for most extremely preterm births in the United States. The key difference in the revised tool is the addition of information on the hospital where the baby was delivered, which researchers determined had similar importance to gestational age in determining how well the infant would do.

“The earlier version of this tool has been used by health providers and families for the past 12 years, but the information it provided is now misleading because it is so out of date,” says Edward Bell, MD, a neonatologist at UI Stead Family Children’s Hospital and professor of neonatology in the Stead Family Department of Pediatrics. “The old tool was based on outcomes of infants born between 1998 and 2003, and outcomes have improved significantly in the years since then.”

Additionally, Bell says, being able to specify where the infant was born can provide a better picture of how well the infant will do; outcomes vary significantly between hospitals based on the care they provide extremely premature newborns, and those numbers could be higher or lower than the national average.

“Bottom line, the baby’s maturity and other factors related to the pregnancy are important in determining the baby’s chance of survival, but where the baby is born and how she or he is cared for are also important.”—Edward Bell, MD

The revised tool, which presents both average infant outcomes and a range of outcomes observed across hospitals in the US, is available to the public at https://www.nichd.nih.gov/research/supported/epbo. Hospital-specific outcomes for hospitals participating in the Vermont Oxford Network are available for that hospital.

The extremely preterm infants in this study were born from weeks 22 through 25 of pregnancy; a full-term pregnancy is 40 weeks. Many of these infants die soon after birth, despite receiving the best treatment available. Although some survive and reach adulthood largely unaffected, others will experience disability, from mild cognitive delays to profound physical or intellectual impairment. Physicians and family members often must choose between giving intensive care (such as mechanical ventilation) to potentially save an infant’s life or forgoing painful medical procedures unlikely to benefit the infant expecting that the infant will not survive.

Like its predecessor, the new tool provides information on infant survival as well as for neurological and developmental outcomes on the basis of five factors: gestational age (the week of pregnancy the infant was born), whether the baby is male or female, birth weight, whether the baby was a single baby or from a twin (or triplet, etc.) pregnancy, and whether the baby’s mother was given a specific medication (antenatal steroids) during labor to accelerate the baby’s maturation and overall development. 

The developers of the tool emphasize that while it provides information useful for families and clinicians considering treatment options, it cannot substitute for a physician’s careful assessment and cannot predict with certainty the outcome for any specific infant but only provides information on outcomes for groups of infants. Every infant is an individual, and factors beyond those included in the updated tool influence infant survival and development.