OBJECTIVE:Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD). METHODS:Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used. RESULTS:Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance immediate caregiving activities with future health outcomes; and integrating primary care, specialty, and community supports. CONCLUSIONS:Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care.

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. (J Pediatr 2024;264:113773).

To characterize a cohort of ventilator-dependent infants and children with bronchopulmonary dysplasia-associated pulmonary hypertension (BPD-PH) and to describe their cardiorespiratory outcomes. 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. Of the 154 subjects, 93 (60.4

BackgroundPatients discharged on home oxygen therapy (HOT) for bronchopulmonary dysplasia (BPD) often receive months of this therapy. A previous trial comparing two methods of HOT weaning showed that increased parent involvement in HOT weaning decreased HOT duration. Our outpatient team uses a standard protocol for outpatient HOT weaning, starting at the first clinic visit 4-6 weeks after discharge.AimTo shorten HOT duration by teaching parents the outpatient HOT weaning process before neonatal intensive care unit (NICU) discharge.MethodsWe launched a quality improvement program in April 2021 for preterm infants with BPD without significant comorbidities who were stable on <= 0.5 L nasal cannula. Eligible infants started the outpatient HOT weaning protocol while inpatient, with education for parents and nurses. The outcome measure was the duration of HOT after discharge. Process measures focused on protocol adherence. Balancing measures included NICU length of stay and appropriateness of parent-directed HOT weaning.ResultsDuring the study period, there were a total of 133 eligible patients discharged on home oxygen, with 75 in the baseline group and 58 in the intervention group. Forty-five (78%) participated in the HOT weaning protocol while inpatient. HOT was reduced from an average of 27 to 12 weeks after May 2021. We observed no change in NICU length of stay or inappropriate HOT weaning.ConclusionEarly introduction of HOT weaning with a focus on caregiver education is associated with a decreased duration of HOT.

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.

Background: Infants with Bronchopulmonary Dysplasia (BPD) are often prescribed diuretics before the neonatal intensive care unit (NICU) discharge. It is unknown whether outpatient medication weaning strategies affect duration of home oxygen therapy. Methods: This was a secondary cohort analysis of infants born <32 weeks gestational age with BPD from 2015-2018 discharged from our NICU or regional NICUs, referred to our pulmonary clinic for home oxygen management. We compared three groups: those discharged with no diuretics, diuretics actively weaned (dose decreased) and diuretics passively weaned (dose not adjusted). Results: Out of 125 infants, 116 were included in the analysis. Forty-five infants were discharged without diuretics; 52 infants were discharged with diuretics that were actively weaned; 19 infants were discharged with diuretics that were passively weaned. Infants who were passively weaned spent the most time on home oxygen (median 28 weeks, IQR 16-52; p=0.011); there were no differences in home oxygen duration in infants actively weaned (median 13 weeks, IQR 10-26) versus not on diuretics (median 22 weeks, IQR 12-30, p=0.285). Multivariable adjustment for other illness characteristics associated with duration of home oxygen did not change this finding. Conclusions: Active weaning of diuretics did not prolong duration of home oxygen, in the setting of a standardized clinical guideline for weaning home oxygen in infants with BPD. These data can serve as baseline information to implement and test standardized strategies for outpatient medication management.

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.

IntroductionDespite 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. MethodsData 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. ResultsBased 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. ConclusionOur 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.

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.

To determine whether a room air challenge (RAC) correlates with duration of respiratory support for infants with bronchopulmonary dysplasia (BPD). Prospective study of preterm infants with BPD from 2015 to 2018. Infants receiving ≤2 l flow at 36 weeks postmenstrual age (PMA) underwent RAC. Cox regression was used to adjust the duration of respiratory support after 36 weeks PMA for significant covariates. Of 161 infants with BPD, 91 were eligible for RAC; 51 passed and 40 failed. Infants who failed RAC had longer respiratory support after 36 weeks PMA than infants who passed (median 19 weeks (IQR 15–33) versus 2 weeks (IQR 1–8, p < 0.001)), which persisted after multivariable adjustment (hazard ratio −1.42, 95% CI −1.94 to −0.91, p < 0.001). Infants failing RAC also had more frequent and longer duration of home oxygen use. RAC may help provide anticipatory guidance regarding duration of respiratory support for infants with BPD.

Background Predischarge capillary blood gas partial pressure of carbon dioxide (pCO(2)) has been associated with increased adverse events including readmission. This study aimed to determine if predischarge pCO(2)or 36-week pCO(2)was associated with increased respiratory readmissions or other pulmonary healthcare utilization in the year after neonatal intensive care unit (NICU) discharge for infants with bronchopulmonary dysplasia (BPD) discharged with home oxygen, using a standardized outpatient oxygen weaning protocol. Methods This was a secondary cohort analysis of infants born <32 weeks gestational age with BPD, referred to our clinic for home oxygen therapy from either from our level IV NICU or local level III NICUs between 2015 and 2017. Infants with major nonrespiratory comorbidities were excluded. Subject information was obtained from electronic health records. Results Of 125 infants, 120 had complete 1-year follow-up. Twenty-three percent of infants experienced a respiratory readmission after NICU discharge. There was no significant association between predischarge or 36-week pCO(2)and respiratory readmissions, emergency room visits, new or increased bronchodilators, or diuretics. Higher 36-week pCO(2)was associated with a later corrected age when oxygen was discontinued (<6 months; median, 54 mmHg; interquartile range [IQR], 51-61; 6-11 months; median, 62 mmHg; IQR, 57-65; >= 12 months, median, 66 mmHg; IQR, 58-73;p = .006). Conclusions Neither predischarge pCO(2)nor 36-week pCO(2)was associated with 1-year respiratory readmissions. However higher pCO(2)at 36 weeks was associated with a longer duration of home oxygen. Neonatal illness measures like 36-week pCO(2)may be useful in communicating expectations for home oxygen therapy to families.