Many Mass. Preemies Miss Programs That Help Babies Reach Key Milestones
Study Finds Many Massachusetts Preemies Miss Critical Early Intervention Services
Each year in Massachusetts, about one percent of babies are born very prematurely, defined as before 32 weeks of pregnancy. These babies — known as very preterm infants (VPI) — face a higher risk of developmental challenges that can affect how they move, learn, and communicate later in life. Programs designed to support these babies’ development early in life can help improve outcomes. In Massachusetts, a state‑funded network of early intervention programs serves more than 40,000 children each year, but many families never receive that care.
In a study of more than 7,000 very preterm infants in Massachusetts born between 2012 and 2019, investigators at Beth Israel Deaconess Medical Center (BIDMC) found that many eligible children do not receive state‑funded early intervention services. Healthcare teams refer most infants for support after birth, but hundreds of those babies never get the necessary evaluation, and fewer still ultimately receive services. The findings, published online in JAMA Pediatrics, also show that Black babies and other children of color are less likely to receive services, and those disparities widen over time.
“In this longitudinal cohort study of very preterm infants, there was notable inequity and attrition across the early intervention care cascade,” said lead author Yarden S. Fraiman, MD, MPH, a neonatologist at BIDMC. “Targeted structural interventions at each step can close the equity gap.”
Using data from the Massachusetts Pregnancy to Early Life Longitudinal (PELL) database, which links birth records with early intervention program data statewide, Fraiman and colleagues found that 84 percent of infants were referred for early intervention services. Healthcare teams typically make those referrals, often before NICU discharge, but fewer and fewer children move through each step. Of the full group, 71 percent were evaluated, and just under 65 percent ultimately received an Individualized Family Service Plan (IFSP), the agreement that begins therapy.
Infants from racial and ethnic minority groups were less likely to move forward at every stage. While more than three-quarters of White infants were evaluated, just 62.5 percent of Black infants were. Only 55 percent of Black babies ultimately received services, compared with more than 68 percent of White infants. While Black infants fared worst of all, other racial and ethnic minority groups also experienced widening disparities over time.
The study did not examine why these gaps occur, but the authors point to longstanding structural inequities as a likely driver. Because Massachusetts’ early intervention programs are organized by geography, differences in resources across communities — as well as barriers tied to language, insurance, and trust in health systems — may all influence whether families are able to access care.
“Health and inequities do not occur at a single point in time, but are connected across the life course, shaped by the interplay between identity, healthcare, and health,” Fraiman said. Our findings show how small inequities can grow over time and offer a roadmap to close gaps in access and improve long‑term outcomes for very preterm infants.”
Co-authors included Joanne F. Keith and Ashley L. O’Donoghue of BIDMC; Wanda Barfield of Emory University School of Medicine; Lindsay Rosenfeld and Marie C. McCormick of Harvard T.H. Chan School of Public Health; Hafsatou Diop of the Massachusetts Department of Public Health; and Jonathan S. Litt of Stanford University School of Medicine.
This work was funded by the Deborah Munroe Noonan Memorial Research Fund. The authors report grant support from the Noonan Fund during the study. Ashley L. O’Donoghue also reported serving as a volunteer case reviewer for the Massachusetts Department of Children and Families Foster Care Review Unit. No other conflicts of interest were reported.
About Beth Israel Deaconess Medical Center
Beth Israel Deaconess Medical Center is a leading academic medical center, where extraordinary care is supported by high-quality education and research. BIDMC is a teaching affiliate of Harvard Medical School, and consistently ranks as a national leader among independent hospitals in National Institutes of Health funding. BIDMC is the official hospital of the Boston Red Sox.
Beth Israel Deaconess Medical Center is a part of Beth Israel Lahey Health, a healthcare system that brings together academic medical centers and teaching hospitals, community and specialty hospitals, more than 4,700 physicians and 39,000 employees in a shared mission to expand access to great care and advance the science and practice of medicine through groundbreaking research and education.
