Racial Inequity in High-Risk Infant Follow-Up Among Extremely Low Birth Weight Infants.

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.

Follow-through care for high-risk infants during the COVID-19 pandemic: lessons learned from the Vermont Oxford Network.

OBJECTIVE: The COVID-19 pandemic has altered the delivery of follow-up care for high-risk infants. We performed an audit to characterize programmatic responses in a quality improvement network. STUDY DESIGN: We audited 43 North American-based follow-up programs of the Vermont Oxford Network Extremely Low Birth Weight Follow-up Study Group in October, 2020. Our electronic survey included yes/no, agree/disagree, and free text response items. RESULT: The response rate was 67.4%. Most programs altered capacity and the timing, frequency, or content of clinical assessments. Most perceived practice changes compromised their ability to ascertain infants' medical and developmental needs. There was a rapid uptake of telemedicine services. Despite challenges with implementation, many endorsed improved connectedness with families. CONCLUSION: Programs adapted rapidly to meet the needs of high-risk infants during the pandemic. Clinical operations, assessment procedures, and quality metrics will also need to evolve. Quality improvement study group collaboratives are well-positioned to coordinate such work.

Growth morbidity in extremely low birth weight survivors of necrotizing enterocolitis at discharge and two-year follow-up.

PURPOSE: The purpose of this study was to examine postnatal growth outcomes and predictors of growth failure at 18-24months corrected age among extremely low birth weight (ELBW) survivors of necrotizing enterocolitis (NEC) compared to survivors without NEC. METHODS: Data were collected prospectively on ELBW (22-27weeks gestation or 401-1000g birth weight) infants born 2000-2013 at 46 centers participating in the Vermont Oxford Network follow-up project. Severe growth failure was defined as <3rd percentile weight-for-age. RESULTS: There were 9171 evaluated infants without NEC, 416 with medical NEC, and 462 with surgical NEC. Rates of severe growth failure at discharge were higher among infants with medical NEC (56%) and surgical NEC (61%), compared to those without NEC (36%). At 18-24months follow-up, rates of severe growth failure decreased and were similar between without NEC (24%), medical NEC (24%), and surgical NEC (28%). On multivariable analysis, small for gestational age, chronic lung disease, severe intraventricular hemorrhage or cystic periventricular leukomalacia, severe growth failure at discharge, and postdischarge tube feeding predicted <3rd percentile weight-for-age at follow-up. CONCLUSIONS: ELBW survivors of NEC have higher rates of severe growth failure at discharge. While NEC is not associated with severe growth failure at follow-up, one quarter of ELBW infants have severe growth failure at 18-24months. TYPE OF STUDY: Prognosis study. LEVEL OF EVIDENCE: II.

Severe neurodevelopmental disability and healthcare needs among survivors of medical and surgical necrotizing enterocolitis: A prospective cohort study.

PURPOSE: This study characterizes neurodevelopmental outcomes and healthcare needs of extremely low birth weight (ELBW) survivors of necrotizing enterocolitis (NEC) compared to ELBW infants without NEC. METHODS: Data were collected prospectively on neonates born 22-27weeks' gestation or 401-1000g at 47 Vermont Oxford Network member centers from 1999 to 2012. Detailed neurodevelopmental evaluations were conducted at 18-24months corrected age. Information regarding rehospitalizations, postdischarge surgeries, and feeding was also collected. "Severe neurodevelopmental disability" was defined as: bilateral blindness, hearing impairment requiring amplification, inability to walk 10 steps with support, cerebral palsy, and/or Bayley Mental or Psychomotor Developmental Index <70. Diagnosis of NEC required both clinical and radiographic findings. RESULTS: There were 9063 children without NEC, 417 with medical NEC, and 449 with surgical NEC evaluated. Significantly higher rates of morbidity were observed among infants with a history of NEC. Those with surgical NEC were more frequently affected across all outcome measures at 18-24months corrected age: 38% demonstrated severe neurodevelopmental disability, nearly half underwent postdischarge operations, and a quarter required tube feeding at home. CONCLUSION: At 18-24months, extremely low birth weight survivors of necrotizing enterocolitis were at markedly increased risk (p<0.001) for severe neurodevelopmental disability, postdischarge surgery, and tube feeding. LEVEL OF EVIDENCE: II (prospective cohort study with <80% follow-up rate).

Neurodevelopmental outcome of extremely low birth weight infants from the Vermont Oxford network: 1998-2003.

BACKGROUND: Physicians and parents face significant uncertainties when making care decisions for extremely low birth weight (ELBW) infants. Many published estimates of death and developmental outcome are from well-funded university programs and may not reflect outcomes of infants from a variety of settings. The best estimates of the probabilities of death and severe disability combine local experience and published data. OBJECTIVE: To describe the neurodevelopmental outcome of ELBW infants from centers of the ELBW Infant Follow-Up Group of the Vermont Oxford Network (VON) and to identify characteristics associated with severe disability. METHODS: Predefined measures of living situation, health and developmental outcome were collected at 18-24 months' corrected age for infants born from July 1, 1998 to December 31, 2003 with birth weights of 401-1,000 g at 33 North American VON centers. Logistic regression was used to identify characteristics associated with severe disability. RESULTS: 6,198 ELBW infants were born and survived until hospital discharge; by the time of follow-up, 88 infants (1.4%) had died. Of the remaining 6,110 infants, 3,567 (58.4%) were evaluated. Severe disability occurred in 34% of the assessed infants. Multivariate logistic regression suggested cystic periventricular leukomalacia, congenital malformation and severe intraventricular hemorrhage were the characteristics most highly associated with severe disability. There were marked variations among the follow-up clinics in the attrition rate. CONCLUSION: ELBW infants completing evaluation were at a high risk for severe disability. There are considerable differences among participating centers in attrition at follow-up. Further resources will be needed to study the effect of follow-up care for this group of infants.

Improving newborn preventive services at the birth hospitalization: a collaborative, hospital-based quality-improvement project.

OBJECTIVE: The goal was to test the effectiveness of a statewide, collaborative, hospital-based quality-improvement project targeting preventive services delivered to healthy newborns during the birth hospitalization. METHODS: All Vermont hospitals with obstetric services participated. The quality-improvement collaborative (intervention) was based on the Breakthrough Series Collaborative model. Targeted preventive services included hepatitis B immunization; assessment of breastfeeding; assessment of risk of hyperbilirubinemia; performance of metabolic and hearing screens; assessment of and counseling on tobacco smoke exposure, infant sleep position, car safety seat fit, and exposure to domestic violence; and planning for outpatient follow-up care. The effect of the intervention was assessed at the end of an 18-month period. Preintervention and postintervention chart audits were conducted by using a random sample of 30 newborn medical charts per audit for each participating hospital. RESULTS: Documented rates of assessment improved for breastfeeding adequacy (49% vs 81%), risk for hyperbilirubinemia (14% vs 23%), infant sleep position (13% vs 56%), and car safety seat fit (42% vs 71%). Documented rates of counseling improved for tobacco smoke exposure (23% vs 53%) and car safety seat fit (38% vs 75%). Performance of hearing screens also improved (74% vs 97%). No significant changes were noted in performance of hepatitis B immunization (45% vs 30%) or metabolic screens (98% vs 98%), assessment of tobacco smoke exposure (53% vs 67%), counseling on sleep position (46% vs 68%), assessment of exposure to domestic violence (27% vs 36%), or planning for outpatient follow-up care (80% vs 71%). All hospitals demonstrated preintervention versus postintervention improvement of > or = 20% in > or = 1 newborn preventive service. CONCLUSIONS: A statewide, hospital-based quality-improvement project targeting hospital staff members and community physicians was effective in improving documented newborn preventive services during the birth hospitalization.