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.

NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families.

The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. This combination has been referred to as an emotional cauldron. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics or mundane ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of these microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss. This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates.

Does faster weight trajectory lead to improved neurodevelopmental outcomes in ELBW infants with bronchopulmonary dysplasia?

OBJECTIVE: Examine the relationship between weight trajectory and 2-year neurodevelopmental outcomes for extremely low birthweight (ELBW) infants with BPD. STUDY DESIGN: Secondary analysis of infants born from 2010 to 2019. The predictor was BPD severity and the outcome was neurodevelopmental impairment, defined as any Bayley Scales of Infant Development (BSID) III score <70 at 24 months' corrected age. Repeated measures logistic regression was performed. RESULTS: In total, 5042 infants were included. Faster weight trajectory was significantly associated with a decreased probability of having at least one BSID III score <70 for infants with grade 1-2 BPD (p < 0.0001) and an increased probability of at least one BSID III score <70 for infants with grade 3 BPD (p < 0.009). There was no significant association between weight trajectory and BSID III score <70 for infants with grade 0 BPD. CONCLUSION: The association between postnatal weight trajectory and neurodevelopmental outcome in this study differs by BPD severity.

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.

High-Risk Infant Follow-Up After NICU Discharge: Current Care Models and Future Considerations.

Preterm infants are at heightened risk for chronic health problems and developmental delays compared with term-born peers. High-risk infant follow-up programs provide surveillance and support for problems that may emerge during infancy and early childhood. Although considered standard of care, program structure, content, and timing are highly variable. Families face challenges accessing recommended follow-up services. Here, the authors review common models of high-risk infant follow-up, describe novel approaches, and outline considerations for improving the quality, value, and equity of follow-up care.

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.

Impaired pulmonary function mediates inattention in young adults born extremely preterm.

AIM: To test whether poor childhood pulmonary function explains the relationship between extremely preterm (EP) birth and attention-deficit/hyperactivity disorder (ADHD) symptoms in young adulthood. METHODS: EPICure birth cohort participants include children born <26 weeks' gestation in the United Kingdom and Ireland in 1995 and their term-born classmates. Predictor was EP birth. Outcomes were inattention/hyperactivity subscale z-scores at 19 years. Forced expiratory volume (FEV1) z-scores in childhood and young adulthood were mediators. We used recursive path analysis to determine the direct effect of EP birth on inattention/hyperactivity and its indirect effect through pulmonary function. RESULTS: Ninety EP and 47 term-born participants had pulmonary function testing at 11 and 19 years. Inattention z-scores were higher in the EP group (mean difference 0.55 [95% CI 0.11, 0.99]) but not hyperactivity. Compared to term-born peers, EP participants had lower FEV1 z-scores at 11 (mean difference-1.35 [95% CI -1.72, -0.98]) and 19 (mean difference-1.29 [95% CI -1.65, -0.92]). Path models revealed that childhood pulmonary function explained the relationship between EP birth and inattention. CONCLUSIONS: Extremely preterm young adults have increased risk for inattention compared to term-born peers. Poor pulmonary function appears to underlie this risk. The mechanisms responsible remain unclear and warrant further study.

Change in neurodevelopmental outcomes for extremely premature infants over time: a systematic review and meta-analysis.

OBJECTIVE: Survival rates of extremely premature infants are rising, but changes in neurodevelopmental impairment (NDI) rates are unclear. Our objective was to perform a systematic review of intrainstitutional variability of NDI over time. DESIGN: Systematic review and meta-analysis. DATA SOURCES: Ovid MEDLINE, Embase, PubMed, Cochrane Library and Google Scholar. STUDY SELECTION: Study eligibility: (1) at least two discrete cohorts of infants born <27 weeks' gestation or <1000 g birth weight, (2) one cohort born after 1990 and at least one subsequent cohort of similar gestational age, (3) all cohorts cared for within the same Neonatal Intensive Care Unit(s) (NICU) and (4) neurodevelopmental outcomes at 18-36 months corrected age. MAIN OUTCOME: Change in NDI rates. Quality, validity and bias were assessed using Grading of Recommendations, Assessment, Development, and Evaluation and Quality in Prognosis Studies guidelines. RESULTS: Of 203 publications, 15 were eligible, including 13 229 infants. At the first time point, average NDI rate across study groups weighted by sample size was 41.0% (95% CI 34.0% to 48.0%). The average change in NDI between time points was -3.3% (95% CI -8·8% to 2.2%). For each added week of gestation at birth, the rate of NDI declined by 9.7% (95% CI 6.2% to 13.3%). Most studies exhibited moderate-severe bias in at least one domain, especially attrition rates. CONCLUSIONS: When comparing discrete same-centre cohorts over time, there was no significant change in NDI rates in infants born <27 weeks' gestation or <1000 g. Higher survival rates unaccompanied by improvement in neurodevelopment highlight urgency for renewed focus on the causes of NDI and evidence-based strategies to reduce brain injury.

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).

Implications of racial/ethnic perinatal health inequities on long-term neurodevelopmental outcomes and health services utilization.

Infants born preterm and with low birth weight have increased risk for neurodevelopmental challenges later in life compared to term-born peers. These include functional motor impairment, cognitive and speech delays, neurobehavioral disorders, and atypical social development. There are well-documented inequities in the population distributions of preterm birth and associated short-term morbidities by race, ethnicity, language, and nativity. Far less is known about how these inequities affect long-term outcomes, though the impact of unequal access to post-discharge support services for preterm infants raises concerns about widening gaps in health, development, and functioning. In this review, we describe what is currently known about the impact of race, ethnicity, nativity, and language on long-term outcomes. We provide a framework for understanding inequities in social, political, and historical context. And we offer guidance for next steps to delineate mechanistic pathways and to identify interventions to eliminate inequities in long-term neurodevelopmental outcomes through research, intervention, and advocacy.

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.

Long-term respiratory and developmental outcomes in children with bronchopulmonary dysplasia and history of tracheostomy.

OBJECTIVE: The long-term morbidity among children with severe bronchopulmonary dysplasia who require tracheostomy (tBPD) relative to those without tracheostomy (sBPD) is not well characterized. We compared childhood lung function and neurodevelopmental outcomes in tBPD and sBPD. STUDY DESIGN: Retrospective case-control study of N = 49 tBPD and N = 280 sBPD subjects in Boston Children's Hospital Preterm Lung Patient Registry and medical record. We compared NICU course, childhood spirometry, and neurodevelopmental testing. RESULT: tBPD subjects were more likely than sBPD to be Black, have pulmonary hypertension, and have subglottic stenosis. tBPD subjects had lower maximal childhood FEV1 % predicted (ß = -0.14) and FEV1/FVC (ß = -0.08); spirometry curves were more likely to suggest fixed extrathoracic obstruction. tBPD subjects had greater cognitive and motor delays <24 months, and greater cognitive delays >24 months. CONCLUSION: Compared to subjects with sBPD who did not require tracheostomy, tBPD subjects suffer from increased long-term impairment in respiratory function and neurodevelopment.

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.

Prevalence of problematic feeding in young children born prematurely: a meta-analysis.

BACKGROUND: Difficulties related to eating are often reported in children born preterm. The objective of this study was to quantitatively synthesize available data on the prevalence of problematic feeding in children under 4 years of age who were born preterm. METHODS: Literature was identified from PubMed, CINAHL, and PsycInfo. The search was limited to English language and publication years 2000-2020. To be included in the meta-analysis, the article had to report the prevalence of problematic oral feeding within a population of children born prematurely (< 37 weeks' gestation), and the child age at the time of study had to be between full-term corrected age and 48 months. For studies meeting inclusion criteria, the following data were extracted: sample size and subsamples by gestational age and/or child age at time of study; definition of problematic feeding; measures used for assessment of feeding; gestational age at time of birth of sample; child age at time of study; exclusion criteria for the study; and prevalence of problematic feeding. Random-effects meta-analyses were performed to estimate the prevalence of problematic feeding across all studies, by gestational age at birth, and by child age at time of study. RESULTS: There were 22 studies that met inclusion criteria. Overall prevalence of problematic feeding (N = 4381) was 42% (95% CI 33-51%). Prevalence was neither significantly different across categories of gestational age nor by child age at the time of study. Few studies used psychometrically-sound assessments of feeding. CONCLUSION: Problematic feeding is highly prevalent in prematurely-born children in the first 4 years of life regardless of degree of prematurity. Healthcare providers of children born preterm should consider screening for problematic feeding throughout early childhood as a potential complication of preterm birth. SYSTEMATIC REVIEW REGISTRATION NUMBER: Not applicable.

Quality improvement for NICU graduates: Feasible, relevant, impactful.

Continuous quality improvement (CQI) has become a vital component of newborn medicine. Applying core principles - robust measurement, repeated small tests of change, collaborative learning through data sharing - have led to improvements in care quality, safety, and outcomes in the Neonatal Intensive Care Unit (NICU). High-risk infant follow-up programs (HRIF) have historically aided such quality improvement efforts by providing outcomes data about NICU interventions. Though as a discipline, HRIF has not universally embraced CQI for its own practice. In this review, we summarize the history of CQI in neonatology and applications of improvement science in healthcare and describe examples of CQI in HRIF. We identify the need for consensus on what defines 'high-risk' and constitutes meaningful outcomes. Last, we outline four areas for future investment: establishing evidence-based care delivery systems, standardizing outcomes and their measures, embracing a family-centered approach prioritizing parent goals, and developing professional standards of care for HRIF.

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.

Predicting the outcomes of preterm neonates beyond the neonatal intensive care unit: What are we missing?

Preterm infants are a population at high risk for mortality and adverse health outcomes. With recent improvements in survival to childhood, increasing attention is being paid to risk of long-term morbidity, specifically during childhood and young-adulthood. Although numerous tools for predicting the functional outcomes of preterm neonates have been developed in the past three decades, no studies have provided a comprehensive overview of these tools, along with their strengths and weaknesses. The purpose of this article is to provide an in-depth, narrative review of the current risk models available for predicting the functional outcomes of preterm neonates. A total of 32 studies describing 43 separate models were considered. We found that most studies used similar physiologic variables and standard regression techniques to develop models that primarily predict the risk of poor neurodevelopmental outcomes. With a recently expanded knowledge regarding the many factors that affect neurodevelopment and other important outcomes, as well as a better understanding of the limitations of traditional analytic methods, we argue that there is great room for improvement in creating risk prediction tools for preterm neonates. We also consider the ethical implications of utilizing these tools for clinical decision-making. IMPACT: Based on a literature review of risk prediction models for preterm neonates predicting functional outcomes, future models should aim for more consistent outcomes definitions, standardized assessment schedules and measurement tools, and consideration of risk beyond physiologic antecedents. Our review provides a comprehensive analysis and critique of risk prediction models developed for preterm neonates, specifically predicting functional outcomes instead of mortality, to reveal areas of improvement for future studies aiming to develop risk prediction tools for this population. To our knowledge, this is the first literature review and narrative analysis of risk prediction models for preterm neonates regarding their functional outcomes.