Objective To examine resource and service use after discharge among infants born extraordinarily preterm in California who attended high-risk infant follow-up (HRIF) clinic by 12 months corrected age. Study design We included infants born 2010-2017 between 22 + 0/7 and 25 + 6/7 weeks' gestational age in the California Perinatal Quality Care Collaborative and California Perinatal Quality Care Collaborative-California Children's Services HRIF databases. We evaluated rates of hospitalization, surgeries, medications, equipment, medical service and special service use, and referrals. We examined factors associated with receiving ≥ 2 medical services, and ≥ 1 special service. Results A total of 3941 of 5284 infants received a HRIF visit by 12 months corrected age. Infants born at earlier gestational ages used more medications, equipment, medical services, and special services and had higher rates of referral to medical and special services at the first HRIF visit. Infants with major morbidity, surgery, caregiver concerns, and mothers with more years of education had higher odds of receiving ≥ 2 medical services. Infants with Black maternal race, younger maternal age, female sex, and discharge from lower level neonatal intensive care units (NICUs) had lower odds of receiving ≥ 2 medical services. Infants with more educated mothers, multiple gestation, major morbidity, surgery, caregiver concerns, and discharge from lower level NICUs had increased odds of receiving a special service. Conclusions Infants born extraordinarily preterm have substantial resource use after discharge. High resource utilization was associated with maternal/sociodemographic factors and expected clinical factors. Early functional and service use information is valuable to parents and underscores the need for NICU providers to appropriately prepare and refer families.

Objective To determine follow-up rates for the high-risk infant follow-up (HRIF) visit at 18-36 months among infants with very low birthweights and identify factors associated with completion. Study design We completed a retrospective cohort study using linked California Perinatal Quality of Care Collaborative neonatal intensive care unit, California Perinatal Quality of Care Collaborative California Children's Services HRIF, and Vital Statistics Birth Cohort databases. We identified maternal, sociodemographic, neonatal, clinical, and HRIF program level factors associated with the 18- to 36-month follow-up using multivariable Poisson regression. Results From 2010 to 2015, among 19 284 infants with very low birthweight expected to attend at least 1 visit at 18-36 months, 10 249 (53%) attended. On multivariable analysis, factors independently associated with attendance at an 18- to 36-month visit included estimated gestational age (relative risk [RR], 1.21; 95% CI, 1.15-1.26; <26 weeks vs >= 31 weeks), maternal education (RR, 1.09; 95% CI, 1.06-1.12; college degree or more vs high school), distance from clinic (RR, 0.92; 95% CI, 0.89-0.97; fourth quartile vs first quartile), and Black non-Hispanic race vs White race (RR, 0.88; 95% CI, 0.84-0.92). However, completion of an initial HRIF visit within the first 12 months was the factor most strongly associated with completion of an 18- to 36-month visit (RR, 6.47; 95% CI, 5.91-7.08). Conclusions In a California very low birthweight cohort, maternal education, race, and distance from the clinic were associated with sustained HRIF participation, but attendance at a visit by 12 months was the most significantly associated factor. These findings highlight the importance of early engagement with all families to ensure equitable follow-through for children born preterm. (J Pediatr 2022;248:30-8).

OBJECTIVE:To determine the rates of high-risk infant follow-up (HRIF) attendance and the characteristics associated with follow-up among infants with hypoxic-ischemic encephalopathy (HIE) in California.STUDY DESIGN:Using population-based datasets, 1314 infants with HIE born in 2010-2016 were evaluated. The characteristics associated with follow-up were identified through multivariable logistic regression.RESULTS:73.9% of infants attended HRIF by age 1. Follow-up rates increased and variation in follow-up by clinic decreased over time. Female infants; those born to African-American, single, less than college-educated, or publicly insured caregivers; and those referred to high-volume or regional programs had lower follow-up rates. In multivariable analysis, Asian and Pacific Islander race/ethnicity had lower odds of follow-up; infants with college- or graduate school-educated caregivers or referred to mid-volume HRIF programs had greater odds.CONCLUSION:Sociodemographic and program-level characteristics were associated with lack of follow-up among HIE infants. Understanding these characteristics may improve the post-discharge care of HIE infants.

Abstract Objective This study was aimed to determine factors associated with attendance at the second high-risk infant follow-up (HRIF) visit (V2) by 20 months of corrected age after a successful first visit (V1), and the impact of rural residence on attendance rates in a statewide population of very low birth weight (VLBW; <1,500 g) infants. Study Design Data linked from the California Perinatal Quality of Care Collaborative (CPQCC) Neonatal Intensive Care Unit (NICU) database and CPQCC-California Children's Services (CCS) HRIF database. Multivariable logistic regression evaluated independent associations of sociodemographic, maternal, family, neonatal clinical, and individual HRIF program differences (factors) with successful V2 in VLBW infants born in 2010 to 2012. Results Of 7,295 eligible VLBW infants, 75% (5,475) attended V2. Sociodemographic factors independently associated with nonattendance included maternal race of Black (adjusted odds ratio [aOR] = 0.61; 95% confidence interval [CI]: 0.5–0.75), public insurance (aOR = 0.79; 95% CI: 0.69–0.91), and rural residence (aOR = 0.74; 95% CI: 0.61–0.9). Factors identified at V1that were associated with V2 attendance included attending V1 within the recommended window (aOR = 2.34; 95% CI: 1.99–2.75) and early intervention enrollment (aOR = 1.39; 95% CI: 1.12–1.61). Neonatal factors associated with attendance included birth weight ≤750 g (aOR = 1.83; 95% CI: 1.48–2.5). There were significant program differences with risk-adjusted rates ranging from 43.7 to 99.7%. Conclusion Sociodemographic disparities and HRIF program factors are associated with decreased attendance at V2 among VLBW infants. These findings highlight opportunities for quality and process improvement interventions starting in the NICU and continuing through transition to home and community to assure participation in HRIF. Key Points Only 75% of VLBW infants attended the second HRIF visit. Those less likely to attend were Black or had rural residence. Infants in early intervention or attending first visit within recommended ages were more likely to attend.

OBJECTIVE:This article characterizes programmatic features of a population-based network of high-risk infant follow-up programs and identifies potential challenges associated with attendance from the providers' perspective.STUDY DESIGN:A web-based survey of high-risk infant follow-up program directors, coordinators, and providers of a statewide high-risk infant follow-up system. Frequencies and percentages were used to describe the survey responses.RESULTS:Of the 68 high-risk infant follow-up programs in California, 56 (82%) responded to the survey. The first visit no-show rate between 10 and 30% was estimated by 44% of programs with higher no-show rates for subsequent visits. Common strategies to remind families of appointments were phone calls and mailings. Most programs (54%) did not have a strategy to help families who lived distant to the high-risk infant follow-up clinic.CONCLUSION:High-risk infant follow-up programs may lack resources and effective strategies to enhance follow-up, particularly for those living at a distance.

OBJECTIVES:To determine rates and factors associated with referral to the California Children's Services high-risk infant follow-up (HRIF) program among very low birth weight (BW) infants in the California Perinatal Quality of Care Collaborative. STUDY DESIGN:Using multivariable logistic regression, we examined independent associations of demographic and clinical variables, neonatal intensive care unit (NICU) volume and level, and California region with HRIF referral. RESULTS:In 2010-2011, 8071 very low BW infants were discharged home; 6424 (80%) were referred to HRIF. Higher odds for HRIF referral were associated with lower BW (OR 1.9, 95% CI 1.5-2.4; ≤ 750 g vs 1251-1499 g), higher NICU volume (OR 1.6, 1.2-2.1; highest vs lowest quartile), and California Children's Services Regional level (OR 3.1, 2.3-4.3, vs intermediate); and lower odds with small for gestational age (OR 0.79, 0.68-0.92), and maternal race African American (OR 0.58, 0.47-0.71) and Hispanic (OR 0.65, 0.55-0.76) vs white. There was wide variability in referral among regions (8%-98%) and NICUs (<5%-100%), which remained after risk adjustment. CONCLUSIONS:There are considerable disparities in HRIF referral, some of which may indicate regional and individual NICU resource challenges and barriers. Understanding demographic and clinical factors associated with failure to refer present opportunities for targeted quality improvement initiatives.