Three-Year Post-Neonatal Intensive Care Unit Health Care Utilization Among Infants with Congenital Anomalies.

OBJECTIVE: To describe 3-year post-neonatal intensive care unit (NICU) health care use among children with congenital anomalies discharged home from a level IV NICU. STUDY DESIGN: Retrospective chart review of children with congenital anomalies enrolled in a previous prospective cohort study from 201 to 2020. We assessed hospital readmission rate, number of surgeries, and durable medical equipment (DME) use by type of anomaly. RESULTS: Among 166 infants enrolled in the original study, 158 survived to NICU discharge. One-third of the cohort had a genetic anomaly. Six of 158 patients (4%) died before 3 years of age. More than one-half the children were readmitted within the first 2 years of life, and one-third were readmitted in the third year of life. Readmissions were greatest for those with multiple, musculoskeletal, and central nervous system anomalies and lowest for abdominal-wall defects. Approximately one-half the children underwent surgeries, and this proportion remained constant over the 3-year time. Sixty-two percent of patients received DME at discharge, with gastrostomy tubes being the most common. Gastrostomy tubes were still present in 75% of the patients at 3 years of age. CONCLUSION: Children with congenital anomalies are at risk for increased health care use during early childhood. Those with multiple anomalies, a genetic syndrome, musculoskeletal, and central nervous system anomalies and those discharged with DME are at greatest risk whereas those with abdominal-wall defects are at lowest risk. Provider awareness, high-quality discharge training, parent psychological support, greater assimilation of families in the NICU, and telehealth may be some strategies to better support these families.

Health-Related Quality of Life for Parents of Infants with Bronchopulmonary Dysplasia.

OBJECTIVE: To determine how bronchopulmonary dysplasia (BPD) affects health-related quality of life (HRQL) among infants from NICU hospitalization through 1-year postdischarge. STUDY DESIGN: This was a prospective cohort study of infants with BPD and their parents. Parent HRQL was measured with the PedsQL Family Impact Module before NICU discharge and 3- and 12-months post-discharge. At 12 months, parent-reported child health outcomes included questions from the Test of Respiratory and Asthma Control in Kids, Warner Initial Developmental Evaluation of Adaptive and Functional Skills, and National Survey of Children with Special Health Care Needs. HRQL change over time was assessed by multivariable linear regression. RESULTS: Of 145 dyads, 129 (89%) completed 3-month follow-up, and 113 (78%) completed 12-month follow-up. In the NICU, lower HRQL was associated with earlier gestational age, postnatal corticosteroids, outborn status, and gastrostomy tubes. At 3 months, lower HRQL was associated with readmissions and home oxygen use. At 12 months, lower HRQL was associated with parent-reported difficulty breathing, lower developmental scores, and not playing with other children. At 3 and 12 months, 81% of parents reported similar or improved HRQL compared with the NICU period. Parents reporting infant respiratory symptoms experienced less improvement. CONCLUSIONS: BPD affects parent HRQL over the first year. Most parents report similar or better HRQL after discharge compared with the NICU stay. Less improvement is reported by parents of infants experiencing respiratory symptoms at 12 months. Efforts to improve parent HRQL should target respiratory symptoms and social isolation.

Neonatal Risk Factors for Pulmonary Vein Stenosis in Infants Born Preterm with Severe Bronchopulmonary Dysplasia.

OBJECTIVE: To evaluate associations between neonatal risk factors and pulmonary vein stenosis (PVS) among infants born preterm with severe bronchopulmonary dysplasia (sBPD). STUDY DESIGN: We performed a case-control study of infants born from 2010 to 2022 at <32 weeks' gestation with sBPD among 46 neonatal intensive care units in the Children's Hospitals Neonatal Consortium. Cases with PVS were matched to controls using epoch of diagnosis (2010-2016; 2017-2022) and hospital. Multivariable logistic regression analyses were utilized to evaluate PVS association with neonatal risk factors. RESULTS: From 10 171 preterm infants with sBPD, we identified 109 cases with PVS and matched those to 327 controls. The prevalence of PVS (1.07%) rose between epochs (0.8% in 2010-2016 to 1.2% in 2017-2022). Relative to controls, infants with PVS were more likely to be <500 g at birth, to be small for gestational age <10th%ile, or have surgical necrotizing enterocolitis, atrial septal defects, or pulmonary hypertension. In multivariable models, these associations persisted, and small for gestational age, surgical necrotizing enterocolitis, atrial septal defects, and pulmonary hypertension were each independently associated with PVS. Among infants on respiratory support at 36 weeks' postmenstrual age, infants with PVS had 4.3-fold higher odds of receiving mechanical ventilation at 36 weeks' postmenstrual age. Infants with PVS also had 3.6-fold higher odds of in-hospital mortality relative to controls. CONCLUSIONS: In a large cohort of preterm infants with sBPD, multiple independent, neonatal risk factors are associated with PVS. These results lay important groundwork for the development of targeted screening to guide the diagnosis and management of PVS in preterm infants with sBPD.

Social Determinants of Health and Timing of Tracheostomy for Severe Bronchopulmonary Dysplasia.

OBJECTIVE: To estimate the association of ZIP code-level social determinants of health (SDoH), specifically household income, education level, and unemployment rate, with post-menstrual age (PMA) at tracheostomy placement in patients with severe bronchopulmonary dysplasia (BPD). STUDY DESIGN: This was a retrospective observational study of infants born <32 weeks' gestation and discharged from a Children's Hospitals Neonatal Consortium newborn intensive care unit. Patients were diagnosed with severe BPD and received tracheostomies before discharge. Maternal ZIP code at admission was linked to that ZIP code's SDoH via the 2021 US Census Bureau 5-year data. Unadjusted and adjusted analyses were completed with separate models fit for each SDoH marker. RESULTS: 877 patients received tracheostomies at median (interquartile) 48 (44-53) weeks' PMA. In multivariable models, patients in the highest education groups received tracheostomies earlier (OR: 95% CI = 0.972: 0.947-0.997, p=0.031), and non-Hispanic Black patients received tracheostomies later compared with non-Hispanic White patients (OR: 1.026; 95% CI =1.005-1.048, p=0.017). For household income and unemployment, the PMA at tracheostomy did not differ by SDoH or race. For all three models, male sex, small for gestation status, and later PMA at admission were associated with later PMA at tracheostomy. For each SDoH marker, significant inter-center variation was noted as several centers had independently increased PMA at tracheostomy. CONCLUSIONS: Education at the ZIP code-level influenced PMA at tracheostomy after adjusting for patient and clinical factors. Adjusted for each SDoH studied, significant differences were noted among centers. Factors leading to the decision and timing of neonatal tracheostomy need further evaluation.

Parental Report of Indoor Air Pollution Is Associated with Respiratory Morbidities in Bronchopulmonary Dysplasia.

OBJECTIVE: To determine the association between indoor air pollution and respiratory morbidities in children with bronchopulmonary dysplasia (BPD) recruited from the multicenter BPD Collaborative. STUDY DESIGN: A cross-sectional study was performed among participants <3 years old in the BPD Collaborative Outpatient Registry. Indoor air pollution was defined as any reported exposure to tobacco or marijuana smoke, electronic cigarette emissions, gas stoves, and/or wood stoves. Clinical data included acute care use and chronic respiratory symptoms in the past 4 weeks. RESULTS: A total of 1011 participants born at a mean gestational age of 26.4 ± 2.2 weeks were included. Most (66.6%) had severe BPD. More than 40% of participants were exposed to ≥1 source of indoor air pollution. The odds of reporting an emergency department visit (OR, 1.7; 95% CI, 1.18-2.45), antibiotic use (OR, 1.9; 95% CI, 1.12-3.21), or a systemic steroid course (OR, 2.18; 95% CI, 1.24-3.84) were significantly higher in participants reporting exposure to secondhand smoke (SHS) compared with those without SHS exposure. Participants reporting exposure to air pollution (not including SHS) also had a significantly greater odds (OR, 1.48; 95% CI, 1.08-2.03) of antibiotic use as well. Indoor air pollution exposure (including SHS) was not associated with chronic respiratory symptoms or rescue medication use. CONCLUSIONS: Exposure to indoor air pollution, especially SHS, was associated with acute respiratory morbidities, including emergency department visits, antibiotics for respiratory illnesses, and systemic steroid use.

Current Trends in Invasive Closure of Patent Ductus Arteriosus in Very Low Birth Weight Infants in United States Children's Hospitals, 2016-2021.

OBJECTIVE: To describe the current practices in invasive patent ductus arteriosus (PDA) closure (surgical ligation or transcatheter occlusion) in very low birth weight (VLBW) infants and changes in patient characteristics and outcomes from 2016 to 2021 among US children's hospitals. STUDY DESIGN: We evaluated a retrospective cohort of VLBW infants (birth weight 400-1499 g and gestational age 22-31 weeks) who had invasive PDA closure within 6 months of age from 2016 to 2021 in children's hospitals in the Pediatric Health Information System. Changes in patient characteristics and outcomes over time were evaluated using generalized linear models and generalized linear mixed models. RESULTS: 2418 VLBW infants (1182 surgical ligation; 1236 transcatheter occlusion) from 42 hospitals were included. The proportion of infants receiving transcatheter occlusion increased from 17.2% in 2016 to 84.4% in 2021 (P < .001). In 2021, 28/42 (67%) hospitals had performed transcatheter occlusion in > 80% of their VLBW infants needing invasive PDA closure, compared with only 2/42 (5%) in 2016. Although median postmenstrual age (PMA) at PDA closure did not change for the overall cohort, PMA at transcatheter occlusion decreased from 38 weeks in 2016 to 31 weeks by 2020, P < .001. Among those infants not intubated prior to PDA closure, extubation within 3 days postprocedure increased over time (yearly adjusted odds ratios of 1.26 [1.08-1.48]). Length of stay and mortality did not change over time. CONCLUSION: We report rapid adoption of transcatheter occlusion for PDA among VLBW infants in US children's hospitals over time. Transcatheter occlusions were performed at younger PMA over time.

Feasibility of Stress Research in Premature Infant-Maternal Dyads During and After Neonatal Intensive Care Unit Hospitalization.

BACKGROUND: Stress from preterm infant admission to the neonatal intensive care unit (NICU) is associated with infant and maternal physiologic changes, including endocrine and epigenetic alterations. Little is known about the mechanisms connecting NICU stress to biologic changes, and whether preterm infant and maternal stress are reciprocal. As a preliminary step, feasibility and acceptability of measuring indicators of stress are required. PURPOSE: This study evaluated the feasibility and acceptability of research examining perceptions and biologic markers of stress in premature infant-maternal dyads during and after NICU hospitalization. METHODS: We evaluated study feasibility using a longitudinal descriptive design. Acceptability was measured via a maternal questionnaire. Exploratory data regarding hospitalization, perceptions of stress, social support and social determinants of health, and biologic markers of stress were collected during the first week of life and again 3 months after NICU. RESULTS: Forty-eight mothers were eligible for the study, 36 mothers were approached, 20 mothers consented to participate, and 14 mothers completed data collection. Mothers reported high levels of study acceptability despite also voicing concern about the sharing of genetic data. Exploration of DNA methylation of SLC6A4 in preterm infants was significant for a strong correlation with perception of total chronic stress. IMPLICATIONS FOR PRACTICE AND RESEARCH: Clinical practice at the bedside in the NICU should include standardized screening for and early interventions to minimize stress. Complex research of stress is feasible and acceptable. Future research should focus on linking early life stress with epigenetic alterations and evaluation of the dyad for reciprocity.

Prospective Risk Stratification Identifies Healthcare Utilization Associated with Home Oxygen Therapy for Infants with Bronchopulmonary Dysplasia.

OBJECTIVE: To test whether prospective classification of infants with bronchopulmonary dysplasia identifies lower-risk infants for discharge with home oxygen who have fewer rehospitalizations by 1 year after neonatal intensive care unit discharge. STUDY DESIGN: This is a prospective single-center cohort that included infants from 2016 to 2019 with bronchopulmonary dysplasia, defined as receiving respiratory support at 36 weeks of postmenstrual age. "Lower-risk" infants were receiving ≤2 L/min nasal cannula flow, did not have pulmonary hypertension or airway comorbidities, and had blood gas partial pressure of carbon dioxide <70 mm Hg. We compared 3 groups by discharge status: lower-risk room air, lower-risk home oxygen, and higher-risk home oxygen. The primary outcome was rehospitalization at 1 year postdischarge, and the secondary outcomes were determined by the chart review and parent questionnaire. RESULTS: Among 145 infants, 32 (22%) were lower-risk discharged in room air, 49 (32%) were lower-risk using home oxygen, and 64 (44%) were higher-risk. Lower-risk infants using home oxygen had rehospitalization rates similar to those of lower-risk infants on room air (18% vs 16%, P = .75) and lower rates than higher-risk infants (39%, P = .018). Lower-risk infants using home oxygen had more specialty visits (median 10, IQR 7-14 vs median 6, IQR 3-11, P = .028) than those on room air. Classification tree analysis identified risk status as significantly associated with rehospitalization, along with distance from home to hospital, inborn, parent-reported race, and siblings in the home. CONCLUSIONS: Prospectively identified lower-risk infants discharged with home oxygen had fewer rehospitalizations than higher-risk infants and used more specialty care than lower-risk infants discharged in room air.

Parent Health-Related Quality of Life for Infants with Congenital Anomalies Receiving Neonatal Intensive Care.

OBJECTIVE: To examine factors associated with parent quality of life during and after neonatal intensive care unit (NICU) discharge among parents of infants with congenital anomalies admitted to the NICU. STUDY DESIGN: This secondary analysis of 2 prospective cohort studies between 2016 and 2020 at a level IV NICU included parents of infants with major congenital anomalies receiving NICU care. The primary outcomes were parent health-related quality of life (HRQL) during the NICU stay and at 3 months post-NICU discharge. RESULTS: A total of 166 parent-infant dyads were enrolled in the study, 124 of which completed the 3-month follow-up interview. During the NICU stay, parent history of a mental health disorder (-13 points), earlier gestational age (-17 points), consultation by multiple specialists (-11 points), and longer hospital stay (-5 points) were associated with lower HRQL. Parents of infants with a neonatal surgical anomaly had higher HRQL (+4 points). At 3 months after NICU discharge, parent receipt of a psychology consult in the NICU, the total number of consultants involved in the child's care, and an infant with a nonsurgical anomaly were associated with lower parent HRQL. Parents of infants with a gastrostomy tube (-6 points) and those with hospital readmission (-5 points) had lower HRQL. Comparing same-parent differences in HRQL over time, parents of infants with anomalies did not show significant improvement in HRQL on discharge home. CONCLUSION: Parents of infants with congenital anomalies reported low HRQL at baseline and at discharge. Parents of infants with nonsurgical, medically complex anomalies requiring multispecialty care represent a vulnerable group who could be better supported during and after their NICU stay.

Uncertainty and perinatal post-traumatic stress disorder in the neonatal intensive care unit.

Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post-traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertainty about illness have been theorized as an antecedent to post-traumatic stress, however the relationship has not been explored in parents of infants requiring care in the NICU. The purpose of this prospective study was to explore parental uncertainty during and after NICU discharge and the relationship between uncertainty and PPTSD. The sample consisted of 319 parents during NICU hospitalization and 245 parents at 3 months postdischarge. Parents who screened positive for PPTSD 3 months after hospital discharge reported more uncertainty both while in the NICU and 3 months after hospital discharge (p < 0.001). In parents with a personal or family history of mental illness, the moderated/mediating structural probit analysis showed no direct or indirect effect of uncertainty during hospitalization or at 3 months after hospital discharge on screening positive for PPTSD. In parents who did not report personal or family history of mental illness, uncertainty at 3 months after hospital discharge had a direct effect (b = 0.678, p < 0.001) and indirect mediating effect (b = 0.276, p < 0.001) on screening positive for PPTSD. The results provide actionable implications for mental health and NICU providers: (1) routine screening for uncertainty and risk factors including previous personal and family history of mental illness, and (2) the development of NICU follow-up support services to mitigate risk for PPTSD.

Actual and Potential Impact of a Home Nasogastric Tube Feeding Program for Infants Whose Neonatal Intensive Care Unit Discharge Is Affected by Delayed Oral Feedings.

OBJECTIVE: To compare healthcare use and parent health-related quality of life (HRQL) in 3 groups of infants whose neonatal intensive care unit (NICU) discharge was delayed by oral feedings. STUDY DESIGN: This was a prospective, single-center cohort of infants in the NICU from September 2018 to March 2020. After enrollment, weekly chart review determined eligibility for home nasogastric (NG) feeds based on predetermined criteria. Actual discharge feeding decisions were at clinical discretion. At 3 months' postdischarge, we compared acute healthcare use and parental HRQL, measured by the PedsQL Family Impact Module, among infants who were NG eligible but discharged with all oral feeds, discharged with NG feeds, and discharged with gastrostomy (G) tubes. We calculated NICU days saved by home NG discharges. RESULTS: Among 180 infants, 80 were orally fed, 35 used NG, and 65 used G tubes. Compared with infants who had NG-tube feedings, infants who had G-tube feedings had more gastrointestinal or tube-related readmissions and emergency encounters (unadjusted OR 3.97, 95% CI 1.3-12.7, P = .02), and orally-fed infants showed no difference in use (unadjusted OR 0.41, 95% CI 0.1-1.7, P = .225). Multivariable adjustment did not change these comparisons. Parent HRQL at 3 months did not differ between groups. Infants discharged home with NG tubes saved 1574 NICU days. CONCLUSIONS: NICU discharge with NG feeds is associated with reduced NICU stay without increased postdischarge healthcare use or decreased parent HRQL, whereas G-tube feeding was associated with increased postdischarge healthcare use.

Home Oxygen Use and 1-Year Readmission among Infants Born Preterm with Bronchopulmonary Dysplasia Discharged from Children's Hospital Neonatal Intensive Care Units.

OBJECTIVE: To determine associations between home oxygen use and 1-year readmissions for preterm infants with bronchopulmonary dysplasia (BPD) discharged from regional neonatal intensive care units. STUDY DESIGN: We performed a secondary analysis of the Children's Hospitals Neonatal Database, with readmission data via the Pediatric Hospital Information System and demographics using ZIP-code-linked census data. We included infants born <32 weeks of gestation with BPD, excluding those with anomalies and tracheostomies. Our primary outcome was readmission by 1 year corrected age; secondary outcomes included readmission duration, mortality, and readmission diagnosis-related group codes. A staged multivariable logistic regression was adjusted for center, clinical, and social risk factors; at each stage we included variables associated at P < .1 in bivariable analysis with home oxygen use or readmission. RESULTS: Home oxygen was used in 1906 of 3574 infants (53%) in 22 neonatal intensive care units. Readmission occurred in 34%. Earlier gestational age, male sex, gastrostomy tube, surgical necrotizing enterocolitis, lower median income, nonprivate insurance, and shorter hospital-to-home distance were associated with readmission. Home oxygen was not associated with odds of readmission (OR, 1.2; 95% CI, 0.98-1.56), readmission duration, or mortality. Readmissions for infants with home oxygen were more often coded as BPD (16% vs 4%); readmissions for infants on room air were more often gastrointestinal (29% vs 22%; P < .001). Clinical risk factors explained 72% of center variance in readmission. CONCLUSIONS: Home oxygen use is not associated with readmission for infants with BPD in regional neonatal intensive care units. Center variation in home oxygen use does not impact readmission risk. Nonrespiratory problems are important contributors to readmission risk for infants with BPD.

Does prenatal counseling for pregnancies complicated by multiple fetal abnormalities concord with postnatal outcomes?

OBJECTIVE: In pregnancies complicated by multiple fetal abnormalities, our objective was to determine the degree of concordance between prenatal prognosis and postnatal outcomes. METHOD: Retrospective cohort study of pregnancies with multiple fetal abnormalities referred to the Fetal Concerns Center of Wisconsin (FCCW) from 2015 to 2018. We reviewed records for anomalies, given prognostic severity, and postnatal outcomes. Prognostic severity was categorized as "likely mortality," "severe impairment," "moderate," and "mild" based on predetermined criteria. RESULTS: In 85 pregnancies with multiple fetal abnormalities, 48% were given a prognosis of "likely mortality," and 19% were given a prognosis of "severe impairment." In pregnancies that were continued after being counseled as "likely mortality," this outcome was concordant in all but one case, despite medical interventions. In pregnancies counseled as "severe impairment," the more common outcome was mortality or severe impairment in 88% of cases and survival with severe impairment in 33% of cases. Postnatal outcomes were concordant with prenatal severity in 68% of the cases, more severe in 20% of the cases, and less severe in fewer than 5% of cases. CONCLUSION: Prenatal predictions about severe outcomes are usually true in pregnancies complicated by multiple abnormalities. In cases of outcome discordance, outcomes tend to be more severe than predicted.

Home Oxygen Use for Preterm Infants with Bronchopulmonary Dysplasia in California.

OBJECTIVES: To identify predictors of home oxygen use in preterm infants with bronchopulmonary dysplasia (BPD) in a statewide cohort, identify hospital variation in home oxygen use, and determine the relationship between home oxygen use and neonatal intensive care unit discharge timing. STUDY DESIGN: This was a secondary analysis of California Perinatal Quality Care Collaborative data. Infants were born <32 weeks of gestation, diagnosed with BPD based on respiratory support at 36 weeks postmenstrual age (PMA), and discharged home. Risk factors for home oxygen use were identified using a logistic mixed model with center as random effect. Estimates were used to calculate each center's observed to expected ratio of home oxygen use, and a Spearman coefficient between center median PMA at discharge and observed and expected proportions of home oxygen use. RESULTS: Of 7846, 3672 infants (47%) with BPD were discharged with home oxygen. Higher odds of home oxygen use were seen with antenatal steroids, maternal hypertension, earlier gestational age, male sex, ductus arteriosus ligation, more ventilator days, nitric oxide, discharge from regional hospitals, and PMA at discharge (receiver operating characteristic area under the curve 0.85). Of 92 hospitals, home oxygen use ranged from 7% to 95%; 42% of observed home oxygen use was significantly higher or lower than expected given patient characteristics. The 67 community hospitals with higher observed rates of home oxygen had earlier median PMA at discharge (correlation -0.27, P = .024). CONCLUSIONS: Clinical and hospital factors predict home oxygen use. Home oxygen use varies across California, with community centers using more home oxygen having a shorter length of stay.

Parent Preferences Regarding Home Oxygen Use for Infants with Bronchopulmonary Dysplasia.

OBJECTIVES: To determine parent preferences for discharge with home oxygen in infants with bronchopulmonary dysplasia. STUDY DESIGN: This was a prospective study of parents of infants born at <32 weeks' gestation with established bronchopulmonary dysplasia and approaching neonatal intensive care unit (NICU) discharge. Parents were presented a hypothetical scenario of an infant who failed weaning to room air and 2 options: discharge with home oxygen or try longer to wean oxygen. The initial scenario risks reflected a 1.5-week difference in NICU length of stay and no differences in other outcomes. Length of stay and readmission outcomes were increased or decreased until the parent switched preference. Three months after discharge, parents were asked to reconsider their preference. Differences were analyzed by χ2 or Kruskal-Wallis tests. RESULTS: Of 125 parents, 50% preferred home oxygen. For parents preferring home oxygen, the most important reason was comfort at home (79%). Forty percent switched preference when the length of stay difference decreased by 1 week; 35% switched when readmission increased by 5%. For parents preferring to stay in NICU, the most important reason was fear of taking care of the child at home (73%). Thirty-two percent switched preference when the length of stay difference increased by 1 week; 31% switched when readmission decreased by 5%. One hundred ten parents completed the 3-month follow-up; 80 were discharged with home oxygen. Seventy-eight percent would prefer home oxygen (97% who initially preferred home oxygen and 60% who initially preferred to stay in the NICU). CONCLUSIONS: Parents weigh differences in NICU length of stay and readmission risk similarly. After discharge, most prefer earlier discharge with home oxygen. Earlier education to increase comfort with home technology may facilitate NICU discharge planning.

A Prospective Study of Parent Health-Related Quality of Life before and after Discharge from the Neonatal Intensive Care Unit.

OBJECTIVE: To determine how infant illness and parent demographics are associated with parent health-related quality of life (HRQL) during and 3 months after hospitalization in the neonatal intensive care unit (NICU). We hypothesized that parents of extremely preterm infants would report lower NICU HRQL than other parents, and that all parents would report improved HRQL after discharge. STUDY DESIGN: This prospective study of parent-infant dyads admitted to a level IV NICU for ≥14 days from 2016 to 2017 measured parent HRQL before and 3 months after discharge using the Pediatric Quality of Life Inventory Family Impact Module. Multivariable regression was used to identify risk factors associated with HRQL differences during hospitalization and after discharge. RESULTS: Of the 194 dyads, 167 (86%) completed the study (24% extremely preterm; 53% moderate to late preterm; 22% term). During the NICU hospitalization, parents of extremely preterm infants reported lower adjusted HRQL (-7 points; P = .013) than other parents. After discharge, parents of extremely preterm infants reported higher HRQL compared with their NICU score (+10 points; P = .001). Tracheostomy (-13; P = .006), home oxygen (-6; P = .022), and readmission (-5; P = .037) were associated with lower parent HRQL 3 months after discharge, adjusted for NICU HRQL score. CONCLUSIONS: Parents of extremely preterm infants experienced a greater negative impact on HRQL during the NICU hospitalization and more improvement after discharge than parents of other infants hospitalized in the NICU. Complex home care was associated with lower parent HRQL after discharge. The potential benefit of home discharge should be balanced against the potential negative impact of complex home care.

The Impact of Pulmonary Hypertension in Preterm Infants with Severe Bronchopulmonary Dysplasia through 1 Year.

OBJECTIVES: To assess the effect of pulmonary hypertension on neonatal intensive care unit mortality and hospital readmission through 1 year of corrected age in a large multicenter cohort of infants with severe bronchopulmonary dysplasia. STUDY DESIGN: This was a multicenter, retrospective cohort study of 1677 infants born <32 weeks of gestation with severe bronchopulmonary dysplasia enrolled in the Children's Hospital Neonatal Consortium with records linked to the Pediatric Health Information System. RESULTS: Pulmonary hypertension occurred in 370 out of 1677 (22%) infants. During the neonatal admission, pulmonary hypertension was associated with mortality (OR 3.15, 95% CI 2.10-4.73, P < .001), ventilator support at 36 weeks of postmenstrual age (60% vs 40%, P < .001), duration of ventilation (72 IQR 30-124 vs 41 IQR 17-74 days, P < .001), and higher respiratory severity score (3.6 IQR 0.4-7.0 vs 0.8 IQR 0.3-3.3, P < .001). At discharge, pulmonary hypertension was associated with tracheostomy (27% vs 9%, P < .001), supplemental oxygen use (84% vs 61%, P < .001), and tube feeds (80% vs 46%, P < .001). Through 1 year of corrected age, pulmonary hypertension was associated with increased frequency of readmission (incidence rate ratio [IRR] = 1.38, 95% CI 1.18-1.63, P < .001). CONCLUSIONS: Infants with severe bronchopulmonary dysplasia-associated pulmonary hypertension have increased morbidity and mortality through 1 year of corrected age. This highlights the need for improved diagnostic practices and prospective studies evaluating treatments for this high-risk population.

Population-Based Outcomes Data for Counseling at the Margin of Gestational Viability.

OBJECTIVE: To survey neonatologists as to how many use population-based outcomes data to counsel families before and after the birth of 22- to 25-week preterm infants. STUDY DESIGN: An anonymous online survey was distributed to 1022 neonatologists in the US. Questions addressed the use of population-based outcome data in prenatal and postnatal counseling. RESULTS: Ninety-one percent of neonatologists reported using population-based outcomes data for counseling. The National Institute of Child Health and Human Development Neonatal Research Network Outcomes Data is most commonly used (65%) with institutional databases (14.5%) the second choice. Most participants (89%) reported that these data influence their counseling, but it was less clear whether specific estimates of mortality and morbidity influenced families; 36% of neonatologist felt that these data have little or no impact on families. Seventy-one percent reported that outcomes data estimates confirmed their own predictions, but among those who reported having their assumptions challenged, most had previously been overly pessimistic. Participants place a high value on gestational age and family preference in counseling; however, among neonatologists in high-volume centers, the presence of fetal complications was also reported to be an important factor. A large portion of respondents reported using prenatal population-based outcomes data in the neonatal intensive care unit. CONCLUSION: Despite uncertainty about their value and impact, neonatologists use population-based outcomes data and provide specific estimates of survival and morbidity in consultation before and after extremely preterm birth. How best to integrate these data into comprehensive, family-centered counseling of infants at the margin of viability is an important area of further study.

A Comparison of Prenatal and Postnatal Models to Predict Outcomes at the Border of Viability.

OBJECTIVE: To compare the accuracy of a prenatal outcomes calculator developed by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) with a postnatal neonatal intensive care unit (NICU) prediction model for mechanically ventilated infants. STUDY DESIGN: Over a 3-year period, we identified 89 ventilated infants born in our NICU between 23 and 25 weeks gestation. We retrospectively determined the predicted morbidity and mortality for each infant using the prenatal NICHD Neonatal Research Network: Extremely Preterm Birth Outcome Data website calculator. For our postnatal prediction model, we assessed 2 factors while each infant was on mechanical ventilation: daily intuitions about whether the infant would die before NICU discharge and abnormal head ultrasound. We compared the prenatal and postnatal models for predicting outcomes at 2 years adjusted age. RESULTS: Of the 89 infants, 54 (61%) died or had neurologic developmental impairment (NDI) and 35 (39%) survived without NDI. The NICHD Neonatal Research Network: Extremely Preterm Birth Outcome Data website calculator predicted that 61 (69%) would either die or have NDI and that 28 (31%) would survive without NDI. Positive clinicians' intuitions about survival combined with normal head ultrasound scan results during a trial of therapy in the NICU predicted a 30% greater chance for survival without NDI than the prenatal tool. CONCLUSIONS: When infants at the border of viability are born and cared for in the NICU, they move from predictions for population-based outcomes into predictions based on individual trajectories and outcomes. A clinical trial of therapy provides additional prognostic information that can guide parental decisions made near the time of birth.

Optimizing trajectories of social adaptive competencies after extreme prematurity during the first 1000 days.

Over 75% of surviving extremely preterm infants do not have major neurodevelopmental disabilities; however, more than half face difficulties with communication, coordination, attention, learning, social, and executive function abilities. These "minor" challenges can have a negative impact on educational and social outcomes, resulting in physical, behavioral, and social health problems in adulthood. We will review assessment tools for social-emotional and adaptive functional skills in early childhood as these determine family and early childhood supports. We highlight bronchopulmonary dysplasia as an example of the critical intersections of parental wellbeing, medical and developmental adaptive trajectories in infancy and early childhood, and partnerships between child neurologists and community medical and developmental professionals. We examine studies of engaging parents to promote developmental trajectories, with a focus on supporting parent-child interactions that underlie communication, social-adaptive behaviors, and learning in the first 1000 days of life. Recommendations for neurodevelopmental surveillance and screening of extremely preterm infants can also be applied to infants with other risk factors for altered neurodevelopment.