Ensuring Optimal Outcomes for Preterm Infants after NICU Discharge: A Life Course Health Development Approach to High-Risk Infant Follow-Up.

Children born prematurely (<37 weeks' gestation) have an increased risk for chronic health problems and developmental challenges compared to their term-born peers. The threats to health and development posed by prematurity, the unintended effects of life-sustaining neonatal intensive care, the associated neonatal morbidities, and the profound stressors to families affect well-being during infancy, childhood, adolescence, and beyond. Specialized clinical programs provide medical and developmental follow-up care for preterm infants after hospital discharge. High-risk infant follow-up, like most post-discharge health services, has many shortcomings, including unclear goals, inadequate support for infants, parents, and families, fragmented service provisions, poor coordination among providers, and an artificially foreshortened time horizon. There are well-documented inequities in care access and delivery. We propose applying a life course health development framework to clinical follow-up for children born prematurely that is contextually appropriate, developmentally responsive, and equitably deployed. The concepts of health development, unfolding, complexity, timing, plasticity, thriving, and harmony can be mapped to key components of follow-up care delivery to address pressing health challenges. This new approach envisions a more effective version of clinical follow-up to support the best possible functional outcomes and the opportunity for every premature infant to thrive within their family and community environments over their life course.

Organizational Health Literacy as a Tool for Health Equity: Application in a High-Risk Infant Follow-Up Program.

BACKGROUND: Healthy People 2030 emphasizes personal health literacy (individual skills) and organizational health literacy-the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. However, research on the latter is in the early stages. METHODS: This study describes an organizational health literacy assessment in a U.S. urban academic children's hospital. A variety of evidence-based health literacy assessments were used to assess patient information materials and the environment, including institutional practices, navigation, culture and language, and communication. Trained interviewers and analysts reached consensus for all assessments. RESULTS: Information Items: SMOG scores (n = 9) ranged from 7th- to 14th-grade reading level (average = 11.3). PEMAT-P scores (n = 9) ranged from 43.8% to 93.8% understandability and 0% to 80% actionability. CDC CCI scores (literacy demand) (n = 6) ranged from 18.2% to 58.8% (≥90% = excellent). SAM scores (suitability) (n = 6) fell in the "adequate" range (43.2-58.3%). The PMOSE/IKIRSCH scores (complexity) (n = 3) noted low-moderate difficulty. Apter's Hierarchy (n = 4) revealed three numeracy domains (50% = descriptive purposes and decision-making, 100% = interpreting information). Organization-level: Walking interviews highlighted organizational facilitators and barriers related to the pre-visit and visit environments. HLE2 domain scores ranged from 52% to 68%. CONCLUSIONS: Organizational health literacy demands far outweigh the average literacy skills of adults in the U.S. (patients and staff). Findings can be used to hone quality improvement and other processes to focus on structural solutions to increase health equity.

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.

To achieve equitable, integrated care for children, family-centered work must focus on systems.

Child health inequities are largely the result of entrenched, structural barriers created by racism, sexism, xenophobia, classism, and ableism that generally persist across the life course (Braveman & Gottlieb, 2014). The impact of such inequities may be magnified for those with complex needs who face considerable challenges in adulthood (Bethell et al., 2014), such as preterm infants, who experience threats to both short- and longterm health and development. Challenges in integrated care remain for all children, especially this population, despite extensive work across many decades to address such issues. The family-centered medical home has been the dominant pediatric care model in the United States for the last four decades (Stille et al., 2010). Despite emphasizing cultural humility and placing family at the care team core, the medical home model has not been able to deliver on securing equitable, integrated care for all (Bennett et al., 2012). (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Race, language, and neighborhood predict high-risk preterm Infant Follow Up Program participation.

OBJECTIVES: Infant Follow Up Programs (IFUPs) provide developmental surveillance for preterm infants after hospital discharge but participation is variable. We hypothesized that infants born to Black mothers, non-English speaking mothers, and mothers who live in "Very Low" Child Opportunity Index (COI) neighborhoods would have decreased odds of IFUP participation. STUDY DESIGN: There were 477 infants eligible for IFUP between 1/1/2015 and 6/6/2017 from a single large academic Level III NICU. Primary outcome was at least one visit to IFUP. We used multivariable logistic regression to identify factors associated with IFUP participation. RESULT: Two hundred infants (41.9%) participated in IFUP. Odds of participation was lower for Black compared to white race (aOR 0.43, p = 0.03), "Very Low" COI compared to "Very High" (aOR 0.39, p = 0.02) and primary non-English speaking (aOR 0.29, p = 0.01). CONCLUSION: We identified disparities in IFUP participation. Further study is needed to understand underlying mechanisms to develop targeted interventions for reducing inequities.

Assessment of Maternal Macular Pigment Optical Density (MPOD) as a Potential Marker for Dietary Carotenoid Intake during Lactation in Humans.

Pregnancy and lactation can change the maternal nutrient reserve. Non-invasive, quantitative markers of maternal nutrient intake could enable personalized dietary recommendations that improve health outcomes in mothers and infants. Macular pigment optical density (MPOD) is a candidate marker, as MPOD values generally reflect carotenoid intake. We evaluated the association of MPOD with dietary and breastmilk carotenoids in postpartum women. MPOD measurements and dietary intake of five carotenoids were obtained from 80 mothers in the first three months postpartum. Breastmilk samples from a subset of mothers were analyzed to determine their nutrient composition. The association between MPOD and dietary or breastmilk carotenoids was quantitatively assessed to better understand the availability and mobilization of carotenoids. Our results showed that dietary α-carotene was positively correlated with MPOD. Of the breastmilk carotenoids, 13-cis-lutein and trans-lutein were correlated with MPOD when controlled for the total lutein in breastmilk. Other carotenoids in breastmilk were not associated with MPOD. Maternal MPOD is positively correlated with dietary intake of α-carotene in the early postpartum period, as well as with the breastmilk content of lutein. MPOD may serve as a potential marker for the intake of carotenoids, especially α-carotene, in mothers in the early postpartum period.

Health related quality of life (HRQoL) in mothers of premature infants at NICU discharge.

BACKGROUND: Premature delivery and a potential Neonatal Intensive Care Unit admission may be associated with the risk of poor maternal health. We aimed to examine the mothers' health-related quality of life (HRQoL) at the time of infant discharge. STUDY DESIGN: Fifty mothers completed the Medical Outcomes Study-Short Form 12. It has a Physical Component Score (PCS) and Mental Component Score (MCS), both with a mean of 50 and standard deviation of 10. Analysis included infant, maternal, and pregnancy-related characteristics. RESULTS: In multivariable analyses, a household income of <150K lowered the PCS by 10 points (p = 0.003) compared to those with higher incomes. Marginal significance was noted in GA, for every week gained the PCS score was lower by 1.5 points. CONCLUSION: Several risk factors are associated with lower physical health ratings in mothers of preterm infants at discharge. This information can be used to inform providers in their anticipatory guidance to the family and follow-up plans.

Racial and Ethnic Disparities in the Use of Mother's Milk Feeding for Very Low Birth Weight Infants in Massachusetts.

OBJECTIVE: To examine the extent to which maternal race/ethnicity is associated with mother's milk use among hospitalized very low birth weight (VLBW) infants and maternal receipt of hospital breastfeeding support practices (human milk prenatal education, first milk expression <6 hours after delivery, lactation consultation <24 hours, any skin-to-skin care <1 month). STUDY DESIGN: We studied 1318 mother-VLBW infant pairs in 9 Massachusetts level 3 neonatal intensive care units (NICUs) between January 2015 and November 2017. We estimated associations of maternal race/ethnicity with any and exclusive mother's milk on day 7, on day 28, and at discharge/transfer and hospital practices. We estimated HRs comparing the probability of continued milk use over the hospitalization by race/ethnicity and tested mediation by hospital practices, adjusting for birth weight and gestational age and including hospital and plurality as random effects. RESULTS: Mothers were 48% non-Hispanic white, 21% non-Hispanic black, and 20% Hispanic. Initiation of mother's milk was similar across groups, but infants of Hispanic mothers (hazard ratio [HR], 2.71; 95% CI, 2.05-3.59) and non-Hispanic black mothers (HR, 1.55; 95% CI, 1.17-2.07) stopped receiving milk earlier in the hospitalization compared with infants of non-Hispanic white mothers. Hispanic mothers had lower odds of providing skin-to-skin care at <1 month (OR, 0.61; 95% CI, 0.43-0.87) compared with non-Hispanic whites. CONCLUSIONS: Hispanic and non-Hispanic black mothers were less likely than non-Hispanic white mothers to continue providing milk for their VLBW infants throughout the NICU stay.

Preterm infants are less likely to have a family-centered medical home than term-born peers.

OBJECTIVE: The family-centered medical home (FCMH) is the recommended healthcare delivery model for children. It is unknown how frequently preterm (PT) children receive care in a FCMH and how this affects health services use. STUDY DESIGN: We studied 18,397 children aged 0-3 years in the 2010/2011 National Survey of Children's Health. We compared PT (<37 weeks) and full-term (FT) children on rates of FCMH and receiving prescribed health services. Regression models included sex, race, income, insurance status, and having a special health care need (SHCN). RESULTS: PT children were significantly less likely to have a FCMH (57% vs. 66%) compared to FT peers despite higher rates of SHCN (16% vs. 5%). PT children were less likely to receive prescribed services (aOR 0.34, 95% CI 0.34, 0.34); lacking a FCMH explained 69% of this effect. CONCLUSIONS: Ensuring PT children have access to medical homes may decrease unmet service needs post-hospital discharge.

Special health care needs explains the effect of extremely low birth weight on math but not language achievement.

OBJECTIVES: Extremely low birth weight (ELBW; <1kg) adolescents are at risk for special health care needs (SHCN) and poor math achievement compared to normal birth weight (NBW) peers. SHCN are associated with poor academic achievement among NBW children. We hypothesize that SHCN explain the effect of ELBW on math achievement. METHODS: We compared age 14 Woodcock-Johnson Calculation standard scores between 181 ELBW infants and 115 NBW controls. Persistent SHCN included: 1) prescription medication or equipment use, 2) subspecialty or therapeutic service use, or 3) hospitalization. We used nonlinear marginal effects models to decompose the total effect of ELBW on math into the following 4 components: the effect of ELBW controlling for SHCN, the effect of SHCN controlling for ELBW, effect modification by SHCN, and mediated interaction where SHCN is both causal mediator and effect modifier. Models were adjusted for sociodemographic factors. RESULTS: ELBW adolescents had lower mean math scores than NBW peers (81.3 vs. 96.4). SHCN were more common among ELBW adolescents (54.1% vs. 27%). The total effect of ELBW on math scores was -15.7 points (95% CI -21.0, -10.5). The effect of birth weight alone was -7.6 points (95% CI -13.7, -1.4); the effect of SHCN alone was negligible. SHCN interaction and mediated interaction effects each accounted for 25% of the total effect. CONCLUSIONS: Birth weight alone explains only half of the effect of ELBW on math achievement. We found evidence of effect modification and mediation by SHCN. Understanding these explanatory pathways may lead to targeted interventions for improved outcomes.

The Impact of Special Health Care Needs on Academic Achievement in Children Born Prematurely.

BACKGROUND: Preterm, low-birth-weight (LBW) children are at increased risk for poor academic achievement and special health care needs (SHCN) compared to term-born peers. It is not known how having SHCN during childhood modifies the relationship between LBW and achievement over time. METHODS: We used data from the Infant Health and Development Program, a multisite randomized trial of an intervention for preterm, LBW infants with longitudinal follow-up. Primary outcome measures were Woodcock-Johnson Tests of Academic Achievement math and reading scores at age 8 and 18 years. Primary predictor was having a SHCN, defined by prescription medication and medical services use, receipt of special therapies, or any functional limitation. We used repeated measures multivariate analysis of covariance to test the effect of SHCN on achievement at 8 and 18 years and effect modification by IQ. RESULTS: The 576 participants had a mean body weight of 1798.1 ± 455.0 g and a median gestational age of 33 weeks (range, 26-37 weeks). Mean achievement scores were as follows: math (age 8) 97.5 ± 21.6, math (age 18) 90.1 ± 18.3, reading (age 8) 99.0 ± 20.1, and reading (age 18) 96.8 ± 23.5. Mean full scale IQ at age 8 was 92.3 ± 18.2. Eighty percent had a SHCN. Mean achievement scores were significantly different between those with and without SHCN in both math and reading. There was no evidence of effect modification by IQ. CONCLUSIONS: SHCNs are associated with poor academic achievement. Targeted interventions for improving performance outcomes by reducing the burden of chronic health problems may be accomplished through prevention strategies or efforts to limit the frequency and severity of symptoms.

Care coordination, the family-centered medical home, and functional disability among children with special health care needs.

BACKGROUND: Children with special health care needs (CSHCN) are at increased risk for functional disabilities. Care coordination has been shown to decrease unmet health service use but has yet been shown to improve functional status. We hypothesize that care coordination services lower the odds of functional disability for CSHCN and that this effect is greater within the context of a family-centered medical home. A secondary objective was to test the mediating effect of unmet care needs on functional disability. METHODS: Our sample included children ages 0 to 17 years participating the 2009-2010 National Survey of Children with Special Health Care Needs. Care coordination, unmet needs, and disability were measured by parent report. We used logistic regression models with covariate adjustment for confounding and a mediation analysis approach for binary outcomes to assess the effect of unmet needs. RESULTS: There were 34,459 children in our sample. Care coordination was associated with lower odds of having a functional disability (adjusted odds ratio 0.82, 95% confidence interval 0.77, 0.88). This effect was greater for care coordination in the context of a medical home (adjusted odds ratio 0.71, 95% confidence interval 0.66, 0.76). The relationship between care coordination and functional disability was mediated by reducing unmet services. CONCLUSIONS: Care coordination is associated with lower odds of functional disability among CSHCN, especially when delivered in the setting of a family-centered medical home. Reducing unmet service needs mediates this effect. Our findings support a central role for coordination services in improving outcomes for vulnerable children.

Prematurity: an overview and public health implications.

The high rate of premature births in the United States remains a public health concern. These infants experience substantial morbidity and mortality in the newborn period, which translate into significant medical costs. In early childhood, survivors are characterized by a variety of health problems, including motor delay and/or cerebral palsy, lower IQs, behavior problems, and respiratory illness, especially asthma. Many experience difficulty with school work, lower health-related quality of life, and family stress. Emerging information in adolescence and young adulthood paints a more optimistic picture, with persistence of many problems but with better adaptation and more positive expectations by the young adults. Few opportunities for prevention have been identified; therefore, public health approaches to prematurity include assurance of delivery in a facility capable of managing neonatal complications, quality improvement to minimize interinstitutional variations, early developmental support for such infants, and attention to related family health issues.