High-risk infant follow-up (HRIF) programs are critically important in following high-risk infants after discharge from the neonatal intensive care unit (NICU), evaluating the functional and developmental outcomes of these infants, and identifying those requiring referral to medical and supportive services for ongoing problems. Infants born premature with very-low birthweight (VLBW) and term infants with moderate-severe hypoxic ischemic encephalopathy (HIE) are two groups that have been the focus of neonatal follow-up investigations due to their significant risk of neurodevelopmental, functional, and medical sequelae. Ensuring referral to HRIF at the time of NICU discharge is the first step in ensuring follow-up, but barriers to referral and to follow-up exist. A study in of the statewide, population-based California Perinatal Quality Care Collaborative (CPQCC) demonstrated significant variations in referral rates of VLBW infants to HRIF associated with patient sociodemographic characteristics, and NICU and regional factors. Beyond the referral process, several studies have shown failure to attend HRIF visits to be associated with social and demographic disparities. In California, a targeted quality improvement (QI) initiative was implemented in 2013 to improve HRIF referral at NICU discharge. This included launching a site-specific online report that matched discharges to home with confirmed HRIF referral, and focused on specific highest risk clinical categories eligible for HRIF, including VLBW status and HIE. Since the implementation of this QI initiative, referral rates have not been reevaluated for VLBW infants. Referral rates for infants with HIE have never been assessed. In addition to HRIF referral, there is a gap in our knowledge regarding patterns of HRIF visit follow-up, and medical and supportive service needs that may be identified during these HRIF visits. Our objectives are to identify changes associated with HRIF referral (Aim 1), HRIF follow-up (Aim 2) and outpatient medical and supportive service needs identified at the first HRIF visit (Aim 3) among VLBW and HIE infants before versus after implementation of this QI initiative. We will also identify changes in patient-level, NICU and regional factors associated with failure to refer, failure to follow-up and need for service referrals at the HRIF visit. For all analyses we will use a large, population-based dataset that includes maternal, neonatal and follow-up data and encompasses >95% of all VLBW infants and infants with HIE in California born from 2010-2016. Our results will demonstrate the effects of targeted QI initiatives on improving follow-up care that can potentially be replicated in other states and frameworks. This project will advance our knowledge of facilitators and barriers to neonatal follow-up and health services access, and present opportunities for future QI and collaborative research to enhance NICU-to-home transition with an ultimate goal of of improving long-term outcomes for high risk infants and their families. ! !

Public Health Relevance

Infants with very-low birthweight and moderate-severe hypoxic ischemic encephalopathy are two populations at significant risk for neurologic and developmental sequelae. High-risk infant follow-up (HRIF) programs are crucial in evaluating outcomes and evolving difficulties these infants may face after discharge from the neonatal intensive care unit, and to ensure their neurologic, developmental, medical and service needs are met. In order to improve the outcomes of these high-risk infants after discharge, research is urgently needed to identify patterns and disparities associated with HRIF referral rates, follow-up rates, and outpatient service utilization.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Postdoctoral Individual National Research Service Award (F32)
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Special Emphasis Panel (ZRG1)
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Davis, Maurice
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Stanford University
Schools of Medicine
United States
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