Home Oxygen Use and Post-Discharge Management of Infants with Bronchopulmonary Dysplasia

Intro

Bronchopulmonary dysplasia (BPD) is one of the most common complications of preterm birth, and its incidence is increasing over time.¹ Often, infants with BPD are discharged home on oxygen therapy (HOT) to reduce the length of stay in the neonatal intensive care unit (NICU), prevent hypoxemia-related complications, reduce pulmonary hypertension risk, support adequate growth, prevent prolonged separation of family, and minimize the consequences of long hospitalizations.^2,3 The American Thoracic Society has concluded that the benefits of HOT exceed the burdens, costs, and harms; data suggest that parent health-related quality of life improves after NICU discharge.^2,4 However, there are significant variations in practices regarding HOT. Below, we summarize some of the existing evidence regarding HOT in BPD.

Variation in use of home oxygen therapy

One reason for the wide variation in use of HOT is that there is wide variation in prevalence of BPD across NICUs, with reported rates from 6% to 57% depending on the criteria used.^5,6 A study of very low-birth-weight infants across California NICUs found that the prevalence of BPD or death ranged from 18% to 73%.⁷ Some of the variation in BPD prevalence is due to intercenter variation in clinical risk factors, which predict a higher likelihood of an infant developing BPD: this includes earlier gestational age, more ventilator days, and patent ductus arteriosus (PDA) ligation.⁸ But even after adjusting for patient-level risk factors such as prevalence and severity of BPD, HOT varies widely across institutions. A 2009 study of 177 Mednax NICUs found a four- to five-fold institutional difference in HOT use across their centers, even after accounting for clinical factors.⁹ A 2019 California study found that while 47% of BPD infants were discharged with HOT, actual use across 92 hospitals ranged from 7% to 95%.¹⁰ Even after adjusting for clinical risk factors, 42% of observed HOT use was either significantly higher or lower than expected. This variation in home oxygen use is not limited to United States-based NICUs. In China, HOT use varied from 0% to 89% across hospitals and was negatively correlated with provincial GDP per capita.¹¹

Some of the variability in HOT may reflect uncertainty in appropriate oxygen saturation targets for infants with BPD. Randomized controlled trials of oxygen saturation targets prior to 32 weeks postmenstrual age (e.g., comparing 91–94% vs. 95–98% SpO2 targets until 32 weeks post-menstrual age) found that the higher oxygen target group received oxygen for a longer duration and had a significantly higher proportion of HOT use.¹² A 2000 survey revealed that pulse oximetry saturation thresholds for initiating HOT varied among neonatologists, ranging from below 84% to below 98%.¹³ Similarly, the target oxygen saturation levels once an infant was on oxygen also showed significant variability, from above 84% to above 98%. A more recent pilot randomized trial, focusing on infants with established BPD (from 36–44 weeks postmenstrual age to 6 months corrected age), compared oxygen saturation targets of >96% vs. 90–94%. The trial found no significant difference in intermittent hypoxemia or time with hypoxemia over the entire study period. However, post-hoc analyses suggested a possible decrease in intermittent hypoxemia before 48 weeks PMA in the higher oxygen saturation target group.¹⁴

Another reason for the variability in HOT may be the unclear association with post-discharge child health outcomes. A propensity score-matched cohort study of extremely preterm infants with BPD indicated that discharge on supplemental oxygen was associated with a marginal improvement in weight z-score and weight-for-length z-score at 22–26 months corrected age. However, this study found no significant difference in neurodevelopmental outcomes between infants discharged on oxygen and those on room air.¹⁵ Another study similarly concluded that while children with BPD on HOT had a higher proportion of abnormal neurodevelopmental outcomes compared to children without BPD, their rates of neurodevelopmental disability were not significantly higher than in children with BPD in room air.¹⁶ When comparing readmission risks, a multicenter study found that infants on oxygen were more likely to be rehospitalized for respiratory illness compared to other preterm infants, propensity-matched for risk factors including median number of days of respiratory support.¹⁵ However, a multicenter study focused exclusively on infants with BPD found that home oxygen use was not associated with the overall odds of readmission, readmission duration, or mortality by 1 year corrected age, compared to other infants with the same BPD severity discharged without home oxygen.¹⁷ Together, these data suggest that HOT may primarily serve as a marker of underlying BPD severity, rather than an independent prognostic factor for neurodevelopmental impairment or readmission risk.

The main factor in NICU variation regarding discharging an infant with BPD on HOT is likely the trade-off considerations between shorter NICU length of stay and increased outpatient specialty care. Multiple studies have found that infants discharged from NICUs with more frequent use of HOT had a 1–2 week shorter NICU stay, adjusted for illness.^9,10,17,18 But all infants discharged with HOT require extra equipment, medications, and appointments to manage the necessary care.^15,18,19 Thus, the decision about discharge with HOT involves important considerations for both families and health systems. One study that systematically measured parent preferences regarding discharge with HOT found that half of parents in the NICU preferred earlier discharge with home oxygen, primarily motivated by the comfort of being at home; for the other half of parents, fear of taking care of the child at home was the primary reason for their preference to try longer to wean oxygen in the hospital. Three months after discharge with HOT, none of the parents who initially preferred HOT reversed their preference, whereas 60% of those who initially preferred longer NICU stay to try to wean from oxygen changed their preference in favor of earlier discharge with HOT, citing easier overall family management at home than in the NICU.²⁰ In a study of parent health-related quality of life for parents of infants with BPD, most parents generally reported similar or improved health-related quality of life after discharge compared to the NICU stay; home oxygen use at 3 months post-discharge was associated with less improvement over time than parents of infants discharged in room air.⁴ This highlights that while HOT can facilitate earlier NICU discharge, it also imposes a significant burden on families. This implies that successful HOT programs require not only medical readiness but also family education, psychological support, and accessible resources.

Preparing For Home Oxygen Prior to Discharge

We believe that in-hospital practices can improve outpatient outcomes when infants are discharged home on oxygen. Clinicians sometimes struggle with initiating discussions about home oxygen with families and are hesitant to do so too soon. However, prior publications suggest that prolonged oxygen requirements, positive pressure ventilation and pCO₂ levels at 36 weeks are associated with increased likelihood of discharging on oxygen and longer duration of HOT.^21–24 It may be prudent to use these clinical markers as prompts to begin discussing the possibility of home oxygen with families.²⁴

Home oxygen can be considered when infants are otherwise meeting criteria for discharge, but remain on low-flow oxygen. Infants should follow the physiologic guidelines for discharge outlined by the American Academy of Pediatrics, including a sustained pattern of weight gain, ability to coordinate feeding with swallowing and breathing, ability to maintain a stable cardiorespiratory function, and demonstration of parent competence in infant care.²⁵

Stability on low-flow oxygen should be achieved prior to discharge, although this is not universally defined. Patients should be monitored overnight on oxygen therapy to ensure intermittent hypoxic episodes are not occurring frequently. Overnight pulse oximetry studies or polysomnography can be useful tools to ensure that infants are stable on a home level of oxygen without significant hypoxic events.²⁶ Predischarge pCO₂ has been utilized in some centers to determine appropriateness for discharge, but it may not be as predictive of adverse respiratory outcomes as once thought.²⁴

Insurance coverage is also important to consider when discharging infants home on oxygen. Despite significant differences in pathophysiology between bronchopulmonary dysplasia and chronic obstructive pulmonary disease (including the profound differences in physiology between infants and adults) indications for funding HOT remain the same in both groups. Patients must demonstrate a PaO₂ at or below 55 mmHg or arterial oxygen saturation of 88% or lower in room air or during sleep/with exercise. There are exceptions granted to patients with pulmonary hypertension.²⁷

A baseline chest x-ray should be performed before discharge to serve as a comparison when infants present with an illness. Before discharge with HOT, most centers in the BPD Collaborative consult with a pulmonary specialist.²⁸

Because outpatient care for an infant with BPD requires adequate preparation and coordination of outpatient services, multidisciplinary BPD-specific services can be helpful in the discharge preparation of infants with HOT. Any NICU that regularly discharges patients with HOT should have a case management team that can coordinate all necessary equipment and arrange for its delivery through a home care company.

Caregiver training is essential in these patients: in addition to standard discharge teaching, parents should also be counseled on observing and monitoring work of breathing, the importance of RSV prophylaxis and influenza vaccination, monitoring for signs of feeding difficulty, and the importance of avoiding secondhand smoke.²⁸ Resuscitation training for caregivers is recommended.²⁹ Caregivers must be trained on the equipment they will be utilizing. This includes both the physical equipment used to deliver home oxygen and pulse oximeters. The American Thoracic Society strongly recommends in-home pulse oximetry for monitoring of HOT in children.² This enables the detection of reduced oxygen saturations during illness, feeding, or physical exertion.^2,30 While the importance of pulse oximetry is clear, guidelines vary on the specific recommendation for continuous monitoring, overnight checks, or spot checks.^2,31,32 Caregivers must receive appropriate training on how to apply and interpret pulse oximetry readings. Without proper education, pulse oximeters can increase caregiver anxiety or lead to over-reliance on the device rather than considering the infant’s overall clinical status.^2,33 Beyond equipment use, caregivers should be educated on the risks associated with oxygen use, such as avoiding open flames, oil-based products, or smoking near the oxygen source.^2,33 Caregivers should also be provided with a list of telephone numbers for emergencies and advice.^2,33 Finally, if institutional protocols regarding HOT weaning exist, we recommend introducing these processes to caregivers prior to hospital discharge, in order to optimize parent preparedness for the outpatient process. Our center has shown that this early parent transition to outpatient care can reduce the duration of HOT without increasing hospital length of stay or affecting weight gain.³⁴

Weaning off home oxygen therapy in the outpatient setting

Even though HOT is utilized worldwide, there is no universal consensus on weaning guidelines.³⁵ Typically, the process begins with a baseline assessment to ensure that the infant is clinically stable. The American, British, Australia and New Zealand Thoracic Societies agree that infants can be considered for weaning if they have no acute illness, recent hospitalizations, signs of respiratory distress or increased work of breathing. They must also maintain acceptable oxygen saturations at their current home oxygen level and demonstrate appropriate weight gain.^2,33,36 Weaning may be delayed if the infant has pulmonary hypertension.³⁵

Once an infant has been deemed stable for oxygen weaning, the weaning process varies among institutions. Some institutions gradually decrease the oxygen flow rate by halving it before a room air challenge.^37,38 House et al., for example, published a protocol in which supplemental oxygen was weaned by 50% until a flow of 0.125 l/min was reached, followed by daytime oxygen weaning.³⁸ Other institutions use polysomnography to verify appropriate overnight oxygen saturations in room before discontinuing HOT.³⁶ Increasingly, use of recorded home oximetry has been shown to shorten the duration of HOT. Rhein et al. demonstrated in a multi-center randomized study that using recorded home oximetry shortened the duration of HOT in a dose-dependent manner.³⁹ Their protocol involved families continuously keeping a recording pulse oximeter on the infant, with data utilized every 4–7 days to adjust oxygen levels (increase, decrease, or maintain).³⁹ Similarly, our institution’s published protocol involves an in-clinic room air trial followed by parent-led home oxygen weaning during the day and followed by an overnight pulse oximetry study (Figure 1).²⁴ Using this parent-led approach, we have also shown that early parental education and protocolized weaning can further shorten the duration of HOT.³⁴

Figure 1:

Algorithm for weaning home oxygen. Infants are seen in BPD clinic 4–6 weeks following NICU discharge. At the first visit the infants are placed on room air and observed for 15–30 minutes. If they fail, then they are followed up in 2–3 months and the room air trial is repeated. If they pass, then room air trials are started and they are followed up every 4–6 weeks until oxygen is discontinued. The parents gradually extend the home room air trials with a goal of 12 hrs during the day. Once the infant is tolerating 12hrs on room air, the parents call pulmonary and a home overnight pulse oximetry study is performed on room air. If the infant passes the home overnight pulse oximetry study the oxygen is discontinued. If they fail, then the home pulse oximetry study is repeated in 4–6 weeks.

From [Dawson SK, D’Andrea LA, Lau R, Lagatta JM. Using a home oxygen weaning protocol and pCO(2) to evaluate outcomes for infants with bronchopulmonary dysplasia discharged on home oxygen. Pediatr Pulmonol. Dec 2020;55(12):3293–3303]; with permission.

Although there is no consensus on the best method for weaning HOT, it is recommended that changes be made gradually, over weeks to months, rather than rapidly. Regular weekly to monthly visits with a qualified provider is also recommended.^2,33 The regular visits ensure supervised weaning, because infants who are weaned from home oxygen before demonstrating readiness have a higher risk of respiratory rehospitalizations and growth failure.^35,38 In our own published protocol with caregiver-led weaning, parents receiving education about home oxygen weaning prior to NICU discharge had shorter duration of HOT with fewer episodes of prematurely initiated weaning. Even after an infant has been weaned to room air, the ATS guidelines recommend maintaining access to HOT for several months, especially during viral season.²

Management when there is a concern for sleep disordered breathing

Premature infants with relatively low supplemental oxygen requirements may still appear to benefit from low-flow nasal cannula as they achieve readiness for other discharge milestones in the NICU; this may be due to a broad range of symptoms which could be categorized under the umbrella term of sleep disordered breathing (SDB).^40,41 SDB describes a range of respiratory abnormalities during sleep such as central apnea, obstructive apnea, periodic beathing, mixed apnea and oxygen desaturation events.⁴² It is also known that premature infants also have immaturity of ventilatory control of breathing and the physiological response to hypoxia, hyperoxia, and hypercapnia is impaired due to chronic hypoxia and hypercapnia altering the maturation of the chemoreceptors.^43–45 Symptoms of SDB could include inability to tolerate weaning flow, inability to wean nocturnal oxygen, needing to resume oxygen after respiratory illness, snoring and poor weight gain.^46–49 Management of SDB could include further evaluation with a polysomnogram and the use of home supplemental oxygen.^50,51

Co-management with diuretics

Infants with BPD discharged on HOT are frequently also sent home with diuretics, with the aim of improving lung compliance and gas exchange.^41,52,53 While short-term diuretic therapy has demonstrated benefits such as reduced oxygen requirements and improved dynamic pulmonary compliance, there is limited evidence to support their long-term benefit.^52,54 The American Thoracic Society (ATS) recommends discontinuing diuretics after discharge from the NICU due to the lack of long-term data.⁴¹ Despite this recommendation, a wide range of diuretic weaning strategies are observed in the outpatient setting.⁵². Approaches include passive weaning, gradual dose reduction (active weaning), and abrupt discontinuation.^52,53,55,56 It has been observed that neonatologists more frequently abruptly discontinue diuretics, while pulmonologists tend to favor gradual tapering.⁵² Regarding the sequence of weaning, Domany et al. found that 59% of infants had their oxygen discontinued prior to diuretic weaning, and Palm et al. similarly noted that diuretics were weaned before HOT.^52,57 Our own experience has shown that active weaning of both diuretics and HOT can occur during the same clinic visit, utilizing a diuretic weaning protocol (Figure 2).⁵⁵ Ultimately, similar to HOT weaning, there is a lack of standardized, evidence-based protocols for diuretic management in infants with BPD on home oxygen, indicating a clear need for further research to optimize therapy.

Figure 2:

Algorithm for weaning diuretics. At the first BPD clinic we assess if the infant had a pre-discharge pCO2 less than 60 mmHg, no cardiac abnormalities, gaining weight appropriately and passes room air trial in clinic. If the infant is on a therapeutic dose, we tell the parents to decrease the dose to daily one week before the next clinic visit and discontinue at that visit if the infant is clinically stable. If the infant is on a subtherapeutic dose, we decrease the dose to daily at the first visit and tell the parents to discontinue a week before the next visit. Passively weaned means we allow the infant to gradually outgrow their dose. From [Dawson SK, D’Andrea LA, Lagatta JM. Management of diuretics in infants with bronchopulmonary dysplasia discharged on home oxygen. Pediatr Pulmonol. Feb 2023;58(2):522–529]; with permission

Illness management and medication use

It is crucial to educate families of infants with BPD on monitoring for signs of acute illness, which may include respiratory distress, hypoxemia, poor growth, feeding difficulties, and increased work of breathing.^33,58 During illness, families should be guided to monitor oxygen saturation and aim to maintain saturations ≥92%^2,29 Some protocols may even allow for a small increase in supplemental oxygen or restarting it during periods of illness.² Bronchodilators, inhaled corticosteroids, and systemic steroids are often used during times of illness due to the shared clinical features of BPD and asthma.^59–61 However, the etiology of wheezing in BPD is likely different from that in asthma, representing an overlapping but distinct clinical entity.⁶¹ Despite these differences, guidelines offer recommendations for medication use. The ATS guideline for the management of Post-Prematurity Respiratory Disease states that the benefits of bronchodilator use likely outweigh the harms, recommending a trial for patients with recurrent coughing and wheezing.⁴¹ Similarly, the European Respiratory Society (ERS) recommends bronchodilators for those with recurrent hospital admissions, exercise intolerance, or asthma-like symptoms, with a focus on monitoring for clinical improvement.^41,54 Both the ATS and ERS have concluded that patients with chronic coughing, wheezing, recurrent hospitalizations, severe respiratory symptoms, or severe BPD may also benefit from inhaled corticosteroids.^41,54 Ultimately, similar to the weaning processes for home oxygen and diuretics, there is a lack of standardized and evidence-based “sick guidance” for families caring for infants with BPD. Further research is needed to optimize home management strategies during acute illnesses.

Post-oxygen weaning follow up, assessment for obstructive lung disease, transition to later childhood and adulthood

Recommendations for follow-up care after HOT weaning are currently limited to expert consensus, highlighting a significant lack of standardization or formal guidelines. While routine follow-up is universally recommended during an infant’s time on HOT, there are no established recommendations for lifelong follow-up once HOT has been discontinued.⁶² A survey of centers participating in the BPD Collaborative revealed that nearly two-thirds used the absence of respiratory symptoms or respiratory medication use as outpatient criteria for discharge from clinic. This often occurred before patients reached an age where pulmonary function testing could be reliably obtained.⁶² Consequently, there are no current guidelines for follow-up of infants with BPD once their initial symptoms improve or resolve.⁶² Despite this lack of formalized follow-up, infants with BPD face a long-term risk of various respiratory complications, including reduced lung function, decreased exercise capacity, asthma-like symptoms, emphysematous changes, chronic obstructive pulmonary disease (COPD)-like disease, pulmonary vascular disease, and a lower respiratory-related quality of life.^63–66 To aid in identifying preterm young adults at risk for COPD, imaging and spirometry could be utilized to track dysanapsis (disproportionate growth of airways and lung parenchyma).⁶⁷ Given the potential for lifelong health impacts, this population would significantly benefit from standardized follow-up guidelines. This could involve either educating primary care physicians on when to refer patients back to subspecialties or implementing routine lifelong follow-up protocols.

Conclusion

While there is significant variation in its utilization, home oxygen remains a valuable therapy for infants with BPD. In-hospital preparation is crucial for the success of neonates and their families before discharge home with oxygen (figure 3). Caregiver education, case management for home health supplies, and pre-discharge screening are all crucial to success after discharge. Once home, the goal is to wean off HOT safely. This is best done slowly, over weeks to months, and should involve joint decision-making between the parents and a provider. Other medications, including diuretics, should also be discontinued slowly. Families of infants with BPD should also receive additional education after discharge on topics that will impact the infant long-term, including the effects of acute illness and the impact of BPD in later childhood.

Figure 3.

Factors determining utilization of home oxygen therapy among NICU graduates (black arrows). Benefits (green arrows) and difficulties (red arrow) associated with home oxygen therapy are shown. Image courtesy of Dr. Satyan Lakshminrusimha, MD, MBBS, FAAP

Best Practices.

What is the current practice for infants with Bronchopulmonary Dysplasia (BPD)?

Infants with BPD are often discharged home on oxygen therapy (HOT) to reduce the length of stay in the neonatal intensive care unit (NICU), prevent hypoxemia-related complications, reduce pulmonary hypertension risk, support adequate growth, prevent prolonged separation of family, and minimize the consequences of long hospitalizations.

Best Practice:

Once discharged, the goal is to wean off HOT safely. This is best done:

• Slowly over weeks to months

• Involve joint decision making between parents and the provider

Pearls:

Caregiver education, case management for home health supplies and pre-discharge screening are crucial to success after discharge

What changes in current practice are likely to improve outcomes?

• There is significant variation in the utilization and management of home oxygen in infants with BPD and specific guidelines and standardization of care would like improve outcomes

• Given the potential for lifelong health impacts, this population would significantly benefit from standardized follow-up guidelines

Key Points:

preparing to discharge with home oxygen, variation in use of home oxygen, weaning off home oxygen in outpatient setting, co-management with diuretics.

Synopsis:

Infants with Bronchopulmonary Dysplasia are often discharged with home oxygen therapy (HOT). However, there are significant variations in practices regarding home oxygen use and its outpatient management. When discharging an infant on HOT, certain discharge criteria must be met such as medical stability, appropriate follow up and caregiver education. Once discharged there are various methods of weaning home oxygen, co-management of diuretics, illness management and post oxygen weaning follow up.