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BACKGROUND AND OBJECTIVES High-risk infant follow-up programs (HRIFs) are a recommended standard of care for all extremely low birth weight (ELBW) infants to help mitigate known risks to long-term health and development. However, participation is variable, with known racial and ethnic inequities, though hospital-level drivers of inequity remain unknown. We conducted a study using a large, multicenter cohort of ELBW infants to explore within- and between-hospital inequities in HRIF participation. METHODS Vermont Oxford Network collected data on 19 503 ELBW infants born between 2006 and 2017 at 58 US hospitals participating in the ELBW Follow-up Project. Primary outcome was evaluation in HRIF at 18 to 24 months’ corrected age. The primary predictor was infant race and ethnicity, defined as maternal race (non-Hispanic white, non-Hispanic Black, Hispanic, Asian American, Native American, other). We used generalized linear mixed models to test within- and between-hospital variation and inequities in HRIF participation. RESULTS Among the 19 503 infants, 44.7% (interquartile range 31.1–63.3) were seen in HRIF. Twenty six percent of the total variation in HRIF participation rates was due to between-hospital variation. In adjusted models, Black infants had significantly lower odds of HRIF participation compared with white infants (adjusted odds ratio, 0.73; 95% confidence interval, 0.64–0.83). The within-hospital effect of race varied significantly between hospitals. CONCLUSIONS There are significant racial inequities in HRIF participation, with notable variation within and between hospitals. Further study is needed to identify potential hospital-level targets for interventions to reduce this inequity.

As the technical ability for genetic diagnosis continues to improve, an increasing number of diagnoses are made in infancy or as early as the neonatal period. Many of these diagnoses are known to be associated with developmental delay and intellectual disability, features that would not be clinically detectable at the time of diagnosis. Others may be associated with cognitive impairment, but the incidence and severity are yet to be fully described. These neonates and infants with genetic diagnoses therefore represent an emerging group of patients who are at high risk for neurodevelopmental disabilities. Although there are well-established developmental supports for high-risk infants, particularly preterm infants, after discharge from the NICU, programs specifically for infants with genetic diagnoses are rare. And although previous research has demonstrated the positive effect of early developmental interventions on outcomes among preterm infants, the impact of such supports for infants with genetic disorders who may be born term, remains to be understood. We therefore review the literature regarding existing developmental assessment and intervention approaches for children with genetic disorders, evaluating these in the context of current developmental supports postdischarge for preterm infants. Further research into the role of developmental support programs for early assessment and intervention in high-risk neonates diagnosed with rare genetic disorders is needed.

In this issue of Pediatrics , Spittle et al1 provide an important follow-up report at 8 years to their randomized trial of early intervention for very preterm infants. The intervention was delivered over 9 sessions during the first year of life and was based on a strong theoretical approach. The well-defined set of services aimed to enhance caretakers’ ability to foster the development of their children and to reduce parental stress.2 At planned follow-up assessments at 2 and 4 years of age,3,4 the authors found no difference between the intervention and control groups in the children’s cognitive, language, and motor scores. They did observe a persistent effect of the intervention on decreased mental health symptoms in caretakers at both points. The current follow-up was undertaken based on the relationship between child development and parental mental health, with the expectation that the persistent advantage in the intervention group would result in better child outcomes. The authors employed an expanded test battery to go beyond intelligence to examine specific domains of child cognitive development, attention, … Address correspondence to Marie C. McCormick MD, ScD, Department of Social and Behavioral Sciences, Harvard School of Public Health, 677 Huntington Ave, Boston, MA 02115. E-mail: mmccormi{at}hsph.harvard.edu