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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.

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BACKGROUND: To characterize a cohort of ventilator-dependent infants and children with bronchopulmonary dysplasia-associated pulmonary hypertension (BPD-PH) and to describe their cardiorespiratory outcomes. METHODS: Subjects with BPD on chronic home ventilation were recruited from outpatient clinics. PH was defined by its presence on ≥1 cardiac catheterization or echocardiogram on or after 36 weeks post-menstrual age. Kaplan-Meier analysis was used to compare the timing of key events. RESULTS: Of the 154 subjects, 93 (60.4%) had PH and of those, 52 (55.9%) required PH-specific medications. The ages at tracheostomy, transition to home ventilator, and hospital discharge were older in those with PH. Most subjects were weaned off oxygen and liberated from the ventilator by 5 years of age, which did not occur later in subjects with PH. The mortality rate after initial discharge was 2.6%. CONCLUSIONS: The majority of infants with BPD-PH receiving chronic invasive ventilation at home survived after initial discharge. Subjects with BPD-PH improved over time as evidenced by weaning off oxygen and PH medications, ventilator liberation, and tracheostomy decannulation. While the presence of PH was not associated with later ventilator liberation or decannulation, the use of PH medications may be a marker of a more protracted disease trajectory. IMPACT STATEMENT: There is limited data on long-term outcomes of children with bronchopulmonary dysplasia (BPD) who receive chronic invasive ventilation at home, and no data on those with the comorbidity of pulmonary hypertension (PH). Almost all subjects with BPD-PH who were on chronic invasive ventilation at home survived after their initial hospital discharge. Subjects with BPD-PH improved over time as evidenced by weaning off oxygen, PH medications, liberation from the ventilator, and tracheostomy decannulation. The presence of PH did not result in later ventilator liberation or decannulation; however, the use of outpatient PH medications was associated with later ventilation liberation and decannulation.

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Multidisciplinary bronchopulmonary dysplasia (BPD) programs provide improved and consistent medical management, care of the developing infant, family support, and smoother transitions in care resulting in improved survival, pulmonary, and extra-pulmonary outcomes. This review summarizes the benefits of interdisciplinary BPD management, as well as strategies for initial programmatic development, program growth, and maintenance at centers across the United States factoring in institutional, provider, and parent reported goals that were derived from a consensus conference on BPD management.

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OBJECTIVE: To identify factors associated with the timing of ventilator liberation and tracheostomy decannulation among infants with severe bronchopulmonary dysplasia (sBPD) who required chronic outpatient invasive ventilation. STUDY DESIGN: Multicenter retrospective study of 154 infants with sBPD on outpatient ventilators. Factors associated with ventilator liberation and decannulation were identified using Cox regression models and multilevel survival models. RESULTS: Ventilation liberation and decannulation occurred at median ages of 27 and 49 months, respectively. Older age at transition to a portable ventilator and at discharge, higher positive end expiratory pressure, and multiple respiratory readmissions were associated with delayed ventilator liberation. Surgical management of gastroesophageal reflux was associated with later decannulation. CONCLUSIONS: Ventilator liberation timing was impacted by longer initial admissions and higher ventilator pressure support needs, whereas decannulation timing was associated with more aggressive reflux management. Variation in the timing of events was primarily due to individual-level factors, rather than center-level factors.

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BACKGROUND: Bronchopulmonary dysplasia (BPD), a common complication of prematurity, is associated with outpatient morbidities, including respiratory exacerbations. Daycare attendance is associated with increased rates of acute and chronic morbidities in children with BPD. We sought to determine if additional children in the household conferred similar risks for children with BPD. METHODS: The number of children in the household and clinical outcomes were obtained via validated instruments for 933 subjects recruited from 13 BPD specialty clinics in the United States. Clustered logistic regression models were used to test for associations. RESULTS: The mean gestational age of the study population was 26.5 ± 2.2 weeks and most subjects (69.1%) had severe BPD. The mean number of children in households (including the subject) was 2.1 ± 1.3 children. Each additional child in the household was associated with a 13% increased risk for hospital admission, 13% increased risk for antibiotic use for respiratory illnesses, 10% increased risk for coughing/wheezing/shortness of breath, 14% increased risk for nighttime symptoms, and 18% increased risk for rescue medication use. Additional analyses found that the increased risks were most prominent when there were three or more other children in the household. CONCLUSIONS: We observed that additional children in the household were a risk factor for adverse respiratory outcomes. We speculate that secondary person-to-person transmission of respiratory viral infections drives this finding. While this risk factor is not easily modified, measures do exist to mitigate this disease burden. Further studies are needed to define best practices for mitigating this risk associated with household viral transmission.

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OBJECTIVE: To compare the cognitive, language and motor scores of infants with severe BPD exposed to postnatal corticosteroids (PCS) and had early (ET), late (LT) or no tracheostomy (NT). METHODS: Retrospective study was designed to compare the developmental outcomes of 71 infants born between 2010 and 2017 with severe BPD exposed to PCS and had ET (≤122 days), LT (>122 days), or NT. RESULTS: Cognitive scores were lower in LT versus NT and ET (p = 0.050); motor scores were worse in LT versus NT and ET (p = 0.004). Dexamethasone use was higher in LT versus NT and ET (p = 0.040). Adjusted for PCS, odds for major cognitive impairment were 90% less in ET versus LT. Trend for improved language and motor outcomes was seen in ET versus LT. CONCLUSION: Infants with severe BPD exposed to PCS and had ET had significantly better cognitive, and trend toward improved language and motor outcomes.

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OBJECTIVES: To describe outpatient respiratory outcomes and center-level variability among children with severe bronchopulmonary dysplasia (BPD) who require tracheostomy and long-term mechanical ventilation. METHODS: Retrospective cohort of subjects with severe BPD, born between 2016 and 2021, who received tracheostomy and were discharged on home ventilator support from 12 tertiary care centers participating in the BPD Collaborative Outpatient Registry. Timing of key respiratory events including time to tracheostomy placement, initial hospital discharge, first outpatient clinic visit, liberation from the ventilator, and decannulation were assessed using Kaplan-Meier analysis. Differences between centers for the timing of events were assessed via log-rank tests. RESULTS: There were 155 patients who met inclusion criteria. Median age at the time of the study was 32 months. The median age of tracheostomy placement was 5 months (48 weeks' postmenstrual age). The median ages of hospital discharge and first respiratory clinic visit were 10 months and 11 months of age, respectively. During the study period, 64% of the subjects were liberated from the ventilator at a median age of 27 months and 32% were decannulated at a median age of 49 months. The median ages for all key events differed significantly by center (P ≤ .001 for all events). CONCLUSIONS: There is wide variability in the outpatient respiratory outcomes of ventilator-dependent infants and children with severe BPD. Further studies are needed to identify the factors that contribute to variability in practice among the different BPD outpatient centers, which may include inpatient practices.

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INTRODUCTION: Despite bronchopulmonary dysplasia (BPD) being a common morbidity of preterm birth, there is no validated objective tool to assess outpatient respiratory symptom control for clinical and research purposes. METHODS: Data were obtained from 1049 preterm infants and children seen in outpatient BPD clinics of 13 US tertiary care centers from 2018 to 2022. A new standardized instrument was modified from an asthma control test questionnaire and administered at the time of clinic visits. External measures of acute care use were also collected. The questionnaire for BPD control was validated in the entire population and selected subgroups using standard methodology for internal reliability, construct validity, and discriminative properties. RESULTS: Based on the scores from BPD control questionnaire, the majority of caregivers (86.2%) felt their child's symptoms were under control, which did not differ by BPD severity (p = 0.30) or a history of pulmonary hypertension (p = 0.42). Across the entire population and selected subgroups, the BPD control questionnaire was internally reliable, suggestive of construct validity (albeit correlation coefficients were -0.2 to -0.4.), and discriminated control well. Control categories (controlled, partially controlled, and uncontrolled) were also predictive of sick visits, emergency department visits, and hospital readmissions. CONCLUSION: Our study provides a tool for assessing respiratory control in children with BPD for clinical care and research studies. Further work is needed to identify modifiable predictors of disease control and link scores from the BPD control questionnaire to other measures of respiratory health such as lung function testing.

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OBJECTIVE: To describe the survival rate, timing of liberation from the ventilator, and factors favorable for decannulation among infants with severe bronchopulmonary dysplasia (sBPD) who received tracheostomy. METHODS: Demographics and clinical outcomes were obtained through retrospective chart review of 98 infants with sBPD who were born between 2004 and 2017, received tracheostomy at <1 year of age, and were followed in the Infant Tracheostomy and Home Ventilator clinic up to 4 years of age. RESULTS: The number of infants with sBPD who received tracheostomy increased significantly over the study period. The median age at tracheostomy was 4 months (IQR 3, 5) or 43 weeks corrected gestational age; the median age at NICU discharge was 7 months (IQR 6, 9). At 48 months of age, all subjects had been liberated from the ventilator, at a median age of 24 months (IQR 18, 29); 52% had been decannulated with a median age at decannulation of 32 months (IQR 26, 39). Only 1 (1%) infant died. Multivariate logistic regression showed infants who were White, liberated from the ventilator by 24 months of age and have public insurance had significantly greater odds of being decannulated by 48 months of age. Tracheobronchomalacia was associated with decreased odds of decannulation. CONCLUSION: Infants with sBPD who received tracheostomy had an excellent survival rate. Liberation from home ventilation and decannulation are likely to occur by 4 years of age.

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OBJECTIVES: To test the hypothesis that daycare attendance among children with bronchopulmonary dysplasia (BPD) is associated with increased chronic respiratory symptoms and/or greater health care use for respiratory illnesses during the first 3 years of life. STUDY DESIGN: Daycare attendance and clinical outcomes were obtained via standardized instruments for 341 subjects recruited from 9 BPD specialty clinics in the US. All subjects were former infants born preterm (<34 weeks) with BPD (71% severe) requiring outpatient follow-up between 0 and 3 years of age. Mixed logistic regression models were used to test for associations. RESULTS: Children with BPD attending daycare were more likely to have emergency department visits and systemic steroid usage. Children in daycare up to 3 years of age also were more likely to report trouble breathing, having activity limitations, and using rescue medications when compared with children not in daycare. More severe manifestations were found in children attending daycare between 6 and 12 months of chronological age. CONCLUSIONS: In this study, children born preterm with BPD who attend daycare were more likely to visit the emergency department, use systemic steroids, and have chronic respiratory symptoms compared with children not in daycare, indicating that daycare may be a potential modifiable risk factor to minimize respiratory morbidities in children with BPD during the preschool years.

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INTRODUCTION: Preterm infants and young children with bronchopulmonary dysplasia (BPD) are at increased risk for acute care utilization and chronic respiratory symptoms during early life. Identifying risk factors for respiratory morbidities in the outpatient setting could decrease the burden of care. We hypothesized that public insurance coverage was associated with higher acute care usage and respiratory symptoms in preterm infants and children with BPD after initial neonatal intensive care unit (NICU) discharge. METHODS: Subjects were recruited from BPD clinics at 10 tertiary care centers in the United States between 2018 and 2021. Demographics and clinical characteristics were obtained through chart review. Surveys for clinical outcomes were administered to caregivers. RESULTS: Of the 470 subjects included in this study, 249 (53.0%) received employer-based insurance coverage and 221 (47.0%) received Medicaid as sole coverage at least once between 0 and 3 years of age. The Medicaid group was twice as likely to have sick visits (adjusted odd ratio [OR]: 2.06; p = 0.009) and emergency department visits (aOR: 2.09; p = 0.028), and three times more likely to be admitted for respiratory reasons (aOR: 3.04; p = 0.001) than those in the employer-based group. Additionally, those in the Medicaid group were more likely to have nighttime respiratory symptoms (aOR: 2.62; p = 0.004). CONCLUSIONS: Children with BPD who received Medicaid coverage were more likely to utilize acute care and have nighttime respiratory symptoms during the first 3 years of life. More comprehensive studies are needed to determine whether the use of Medicaid represents a barrier to accessing care, lower socioeconomic status, and/or a proxy for detrimental environmental exposures.

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In recent years, with increased survival of infants with severe bronchopulmonary dysplasia (BPD), long term ventilation due to severe BPD has increased and become the most common indication for tracheostomy in infants less than one year of age. Evidence shows that tracheostomy in severe BPD may improve short- and long-term respiratory and neurodevelopmental outcomes. However, there is significant variation among centers in the indication, timing, intensive care management, and follow-up care after hospital discharge of infants with severe BPD who received tracheostomy for chronic ventilation. The timing of liberation from the ventilator, odds of decannulation, rate of rehospitalization, growth, and neurodevelopment are all clinically important outcomes that can guide both clinicians and parents to make a well-informed decision when choosing tracheostomy and long-term assisted ventilation for infants with severe BPD. This review summarizes the current literature regarding the indications and timing of tracheostomy placement in infants with severe BPD, highlights center variability in both intensive care and outpatient follow-up settings, and describes outcomes of infants with severe BPD who received tracheostomy.

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OBJECTIVE: To measure short-term outcomes of neonates with congenital diaphragmatic hernia (CDH) while on Neurally Adjusted Ventilator Assist (NAVA), and to measure the impact of a congenitally abnormal diaphragm on NAVA ventilator indices. STUDY DESIGN: First, we conducted a retrospective-cohort analysis of 16 neonates with CDH placed on NAVA over a treatment period of 72 h. Second, we performed a case-control study comparing NAVA level and Edi between neonates with CDH and those without CDH. RESULTS: Compared to pre-NAVA, there were clinically meaningful improvements in PIP (p < 0.003), Respiratory Severity Score (p < 0.001), MAP (p < 0.001), morphine (p = 0.004), and midazolam use (p = 0.037). Compared to a 1:2 matched group without CDH, there was no meaningful difference in NAVA level (p = 0.286), Edi-Peak (p = 0.315), or Edi-Min (p = 0.266). CONCLUSIONS: The potential benefits of NAVA extend to neonates with CDH. There is minimal compensatory change in Edis, and higher/lower ventilator settings compared to neonates without CDH.

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OBJECTIVE: To determine if multidisciplinary team-based care of severe BPD/CLD infants improve survival to discharge. DESIGN/METHODS: Retrospective review of severe BPD/CLD infants cared for by dedicated multidisciplinary CLD team using consensus-driven protocols and guidelines. RESULTS: Total of 267 patients. Median gestational age was 26 weeks (IQR 24, 32); median birth-weight was 0.85 (IQR 0.64, 1.5). Twenty-four percent were preterm with severe BPD, 46% had other primary respiratory diseases (none BPD diseases). Total number of patients, proportion of patients with tracheostomy, prematurity, and genetic diagnoses increased over time. 88.8% survived to discharge. Unadjusted logistic regression showed that tracheostomy was not associated with odds of death; secondary pulmonary hypertension was associated with odds of tracheostomy (OR = 1.795 p value = 0.0264), or death (OR = 8.587 p value = <0.0001), or tracheostomy + death (OR = 13.58 p value = 0.0007). CONCLUSIONS: Over time, mortality improved for infants with tracheostomy cared for by a multidisciplinary severe BPD/CLD team. Secondary pulmonary hypertension was associated with tracheostomy, or death, or tracheostomy + death.

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INTRODUCTION: Bronchopulmonary dysplasia (BPD) is a common respiratory sequelae of preterm birth, for which longitudinal outpatient data are limited. Our objective was to describe a geographically diverse outpatient cohort of former preterm infants followed in BPD-disease specific clinics. METHODS: Seven BPD specialty clinics contributed data using standardized instruments to this retrospective cohort study. Inclusion criteria included preterm birth (<37 weeks) and respiratory symptoms or needs requiring outpatient follow-up. RESULTS: A total of 413 preterm infants and children were recruited (mean age: 2.4 ± 2.7 years) with a mean gestational age of 27.0 ± 2.8 weeks and a mean birthweight of 951 ± 429 grams of whom 63.7% had severe BPD. Total, 51.1% of subjects were nonwhite. Severe BPD was not associated with greater utilization of acute care/therapies compared to non-severe counterparts. Of children with severe BPD, differences in percentage of those on any home respiratory support (p = .001), home positive pressure ventilation (p = .003), diuretics (p < .001), inhaled corticosteroids (p < .001), and pulmonary vasodilators (p < .001) were found between centers, however no differences in acute care use were observed. DISCUSSION: This examination of a multicenter collaborative registry of children born prematurely with respiratory disease demonstrates a diversity of management strategies among geographically distinct tertiary care BPD centers in the United States. This study reveals that the majority of children followed in these clinics were nonwhite and that neither variation in management nor severity of BPD at 36 weeks influenced outpatient acute care utilization. These findings suggest that post-neonatal intensive care unit factors and follow-up may modify respiratory outcomes in BPD, possibly independently of severity.

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BACKGROUND: Outcome of infants with tracheostomy have not been well described in the literature. Our objective was to describe the respiratory, growth, and survival outcomes of infants with tracheostomy. METHODS: A retrospective study was conducted on 204 infants born between 2005 and 2015 with tracheostomy at <1 year of age and follow-up in the Infant Tracheostomy and Home Ventilator Clinic up to 4 years of age. RESULTS: The mean age at tracheostomy was 4.5 months with median age of 3 months. Median age of decannulation was 32 months. The time from tracheostomy placement to complete discontinuation of mechanical ventilation was 15.4 months and from tracheostomy to decannulation was 33.8 months. Mortality rate was 21% and median age of death was 18 months. Preterm infants with acquired airway and lung disease (BPD) and born at <28 weeks' gestation had a significantly higher survival rate compared to term infants. The z-scores for weight and weight for length improved from the time of discharge (mean chronological age 6.5 months) to first year and remained consistent through 3 years. CONCLUSIONS: Premature infants had a higher rate of discontinuation of mechanical ventilation and decannulation compared to term infants. These infants showed consistent growth and comparable survival rate. IMPACT: Infants with tracheostomy and ventilator dependence followed in a multidisciplinary clinic model may have improved survival, growth, and earlier time to decannulation. Preterm infants with acquired airway and lung disease (BPD) with tracheostomy had a higher survival rate compared to term infants with various tracheostomy indications. The age at tracheostomy in infants was 4.5 months and of decannulation was 37 months. Time from tracheostomy to complete discontinuation of mechanical ventilation was 15.4 months. Addition of this data to the sparse literature will be crucial in counseling the families and education of medical staff.

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INTRODUCTION: Tracheostomy in children is often performed to alleviate airway obstruction (AO) or to facilitate long-term ventilator support due to respiratory failure of various etiologies, such as heart failure, and postoperative respiratory failure. Although many of these pathologies are common among trisomy 21 patients, tracheostomy rates among this population have not previously been reported. The aim of our study was to determine the incidence of trisomy 21 patients undergoing tracheostomy. Secondary objectives include decannulation rates and mortality associated with tracheostomy. MATERIALS AND METHODS: A retrospective cohort study was conducted on pediatric trisomy 21 patients undergoing tracheostomy between 2004 and 2013. RESULTS: Twenty patients underwent tracheostomy at a median age of 7.1 months (interquartile range [IQR] = 3.5,21.3). The estimated incidence of tracheostomy in trisomy 21 patients among our tracheostomy population was 1.7% (20/1173) over 10 years. The most common indications were airway obstruction (AO) (55%), cardiac/pulmonary respiratory failure (CRF) (25%), or both (20%). Overall mortality was 30%, much lower among AO patients (9%) than CRF (40%) or both (60%), (P = 0.029). Nine patients (45%) were successfully decannulated, with median duration of cannulation of 2.2 years (IQR = 1.7,3). CONCLUSIONS: This study suggests a rate of tracheostomy in the pediatric trisomy 21 population approximately 3 times that of the general pediatric population. Over half in this cohort underwent tracheostomy for isolated AO, while the general pediatric tracheostomy population demonstrates a much higher prevalence of prematurity-related CRF. Overall mortality rate and decannulation rate approximated that of the general pediatric tracheostomy population, although outcomes were significantly poorer among patients trisomy 21 patients undergoing tracheostomy for CRF.

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OBJECTIVE: The impact of tracheostomy on language and cognitive development in infants with severe bronchopulmonary dysplasia (BPD) is not known. We hypothesize that tracheostomy has an independent negative impact on language and cognitive development in infants with severe BPD. STUDY DESIGN: This is a retrospective cohort study of de-identified data of infants with severe BPD who received tracheostomy at <2 years of age, compared with infants with severe BPD without tracheostomy. The primary outcomes measured were total language and cognitive scores at 2-3 years of age as determined by Bayley Scales of Infant and Toddler Development, 3rd Edition. RESULTS: A total of 26 patients with tracheostomies and 28 patients without tracheostomies were analyzed. There was no significant difference in total language development or cognitive development between patients with tracheostomies and those without. Insurance status had an effect on language and cognition while controlling for trach status. CONCLUSIONS: Tracheostomy does not independently impact the language and cognitive development of infants with severe BPD.

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Hearing loss is the most common congenital birth defect. In 2007, American Academy of Pediatrics updated the hearing screen guidelines to recommend hearing screen by 1 month of age, diagnostic evaluation by 3 months, and early interventions by 6 months. Early interventions have been shown to improve developmental outcome in children with hearing loss. Infants admitted to the neonatal intensive care unit (NICU) are at higher risk for hearing loss. For infants born before 34 weeks' gestation, there are no guidelines for initial hearing screen. Although auditory brain stem response can be reliably performed at 32 to 34 weeks, in most NICUs, they are screened prior to discharge per universal hearing screen guidelines. In high-risk infants, often with prolonged hospitalization, this leads to missed opportunity for early detection and implementation of early intervention services. Using quality improvement methodology, an updated hearing screen algorithm was developed and implemented in our level IV NICU along with an electronic medical record tool to improve the process of identifying infants meeting criteria for hearing screen.

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