Megan Paulsen, MD recently received an internal research grant from the Children’s Minnesota Research Institute to redefine outcomes for premature infants with the goal of improving long-term outcomes for future neonatal intensive care unit (NICU) patients.
The study’s central hypothesis is that a Children’s Minnesota-specific longitudinal database will illuminate health care access gaps, inform service needs, and guide improvements in health care delivery. By capturing outcomes that extend beyond traditional early-life assessments, this project will set a precedent for identifying early predictors of later health and development needs, ultimately facilitating evidence-based improvements in care and support for extremely premature children, setting a new standard for comprehensive outcome tracking in neonatal care.
“This approach enables a more inclusive understanding of the diverse outcomes experienced by children born extremely preterm, opening new avenues for long-term neonatal outcome research, and most importantly, facilitate evidence-based improvements in care and support of children born extremely preterm here at Children’s Minnesota,” Dr. Paulsen said.
Identifying health care gaps
Currently, NICU follow-up clinics are the standard of care for monitoring neurodevelopmental outcomes in infants born extremely preterm (< 28 weeks gestational age), however, recent evidence from care provider surveys and investigation later in childhood suggest the field’s current approach is incomplete.
Current neonatal outcome research in the United States primarily focuses on NICU morbidities and neurodevelopmental impairment at 2 years of age. This proposal addresses two gaps in this current method of longitudinal outcome tracking.
First, these outcomes have been defined by the research community and have historically not included input from the families who care for these patients. This proposal addresses this by surveying parents about what outcomes are meaningful to the patient during and after NICU discharge.
Second, while these established benchmarks are critical, they often provide limited predictive value for health trajectories later in childhood and fail to capture the full range of developmental and health outcomes for extremely preterm infants. This narrow focus can overlook meaningful outcomes that matter to families and impact their quality of life, thus underserving the majority of extremely preterm infants whose needs extend beyond severe disability.
This research addresses the need for more comprehensive longitudinal data, which could improve the understanding of the trajectory of health and development in extremely preterm infants and enable better, more tailored long-term support for these children and their families.
Starting with Children’s Minnesota
The overall objective of this study is to define quality data elements for a database that will capture health outcomes specific to extremely preterm infants born at Children’s Minnesota. This centralized database will allow for longitudinal tracking of health, developmental, and service utilization outcomes from NICU discharge through childhood.
This study aims to define and capture long-term outcomes that are relevant to all extremely preterm infants, not just those with severe disabilities. The impact of this research aims to establish a comprehensive, longitudinal database at Children’s Minnesota, that incorporates a wider array of data elements than what exists currently– including functional, developmental, and health service utilization metrics- guided by input from parents, providers, and national experts. The goal would then be to share these valuable learnings with other neonatal providers through scientific presentations and publications.
Dr. Paulsen’s grant is titled Preterm Infant Longitudinal Outcome Tool (PILOT). Its coinvestigators are Andrea Lampland, MD, Heidi Kamrath, DO and Ann Downey, MD.
About Children’s Minnesota’s neonatal program
The Children’s Minnesota neonatology program is a vital resource for families across the Midwest. Our neonatal team of more than 500 doctors, surgeons, neonatal nurse practitioners and pediatric specialists is the largest in Minnesota —and one of the largest in the country. With close to 200 neonatal beds in our hospitals and special care nurseries, we welcome thousands of babies every year. To refer a patient, please contact Children’s Minnesota Physician Access at 866-755-2121.
About Children's Minnesota Research Institute
The Children’s Minnesota Research Institute is dedicated to pushing the boundaries of pediatric research. Our kid experts are constantly exploring new avenues for diagnosing and treating childhood illnesses. Visit our Research Institute for more information.
