Boston Children’s bronchopulmonary dysplasia (BPD) rehospitalization rates for children aged 1 and 2 years are dramatically lower than the national average. Lawrence Rhein, MD, a neonatologist and pulmonologist, and director of the Center for Healthy Infant Lung Development, Boston Children’s Hospital, Massachusetts, says it’s not high-priced technology that keeps children with this serious lung disease out of the hospital.
Boston Children’s bronchopulmonary dysplasia (BPD) rehospitalization rates for children aged 1 and 2 years are dramatically lower than the national average. Lawrence Rhein, MD, a neonatologist and pulmonologist, and director of the Center for Healthy Infant Lung Development, Boston Children’s Hospital, Massachusetts, says it’s not high-priced technology that keeps children with this serious lung disease out of the hospital. Rather, it’s simple, underappreciated best practices that have resulted in the drop in readmission rates for Boston Children’s BPD patients to less than a third of published reports.
Often a complication of respiratory therapy in premature infants with respiratory distress syndrome, BPD affects about 5000 to 10,000 US-born babies each year.1 “The likelihood for developing BPD increases with the degree of prematurity and reaches 25% to 35% in very low-birth-weight and extremely low-birth-weight infants,” researchers report in an April 2012 study in Advances in Therapy.2
Most BPD infants recover and live normal lives, but the first 2 years are precarious. Babies might need supplemental oxygen, especially during the first year. Lung infections are common during the first 2 years.1
If not caught and managed early, lung infections often send BPD patients and their families to the hospital. Researchers studying infants born at less than 33 weeks’ gestational age found that in the first year of life, 49% were rehospitalized, which was more than twice the rate of rehospitalization of the non-BPD population.3 In another study of 78 infants of 26 to 33 weeks’ gestation with BPD, the overall rehospitalization rate was 58%.5
Rehospitalization rates in the first 18 to 22 months corrected age in the most severe infants are up to 39%, according to a study from the National Institutes of Health in a large national cohort. Even less-severe infants had very high rates of rehospitalization in this study.6
In stark contrast, Boston Children’s researchers studied rehospitalization rates among the hospital’s patients who were less than or equal to 32 weeks' gestation. At 1 year, 11% were readmitted; at 2 years, closer to 16%. Rhein notes that almost all these infants represented the more severe end of the spectrum when it came to their BPD status. The researchers studied preterm infants with pulmonary follow-up compared with infants without pulmonary follow-up. Those with follow-up were younger and smaller at birth, and needed more supplemental oxygen and diuretics. Despite these differences in lung disease status, healthcare utilization rates were the same in both groups.7
Rhein says that Boston Children’s focuses on treating babies with BPD, so the staff there has experience to its advantage. That’s often not the case at other hospitals and practices.
“Prematurity is not that rare anymore, but of the number of kids who have significant lung disease, any individual pediatrician might only see a couple of these kids in their practice each year,” Rhein says.
While premature births continue to be common, they’re declining. The national preterm birth rate in 2013 was the lowest in 17 years, at 11.4%, according to the March of Dimes.8 Still, about 450,000 babies are born too soon every year.9 Medical expenses for an average premature infant are in the neighborhood of $54,000 compared with $4000 for a healthy newborn.10
PODCAST: One in 9 US infants is born prematurely-at 37 or fewer weeks' gestation. Charles J Lockwood, MD, MHCM, senior vice president at the University of South Florida (USF) Health, and dean, USF Morsani College of Medicine, Tampa, reveals what he believes are strategies that can improve the sobering statistics. To listen, click here: ContemporaryPediatrics.com/Lockwood-prematurity
“Having a clinic that’s dedicated to this population really helps the very hard transition out of the [neonatal intensive care unit (NICU)] into the world of outpatient medicine,” Rhein says. “Some of these babies have been in the NICU for months, and parents get used to having that help from very dedicated nurses who are really attentive to their needs. All of a sudden when they go home, their babies are much healthier [than] when they started, but they’re still fragile.”
That’s where the problems start, according to Rhein. Parents generally aren’t equipped with what they need to know to keep their newborns out of acute care.
“I think if you asked NICU families, 1000 out of 1000 say the number 1 issue that stresses them out is that transition from NICU to home,” Rhein says. “A lot of our kids are on technology. They have gastric feeding tubes and need guidance from other specialists.”
The staff at Boston Children’s follows up with families within a few weeks after discharge. That’s when staff teaches families how to recognize respiratory issues early, according to Rhein.
The key, according to Rhein, is for the family to understand a child’s baseline status. The goal at Boston Children’s is to teach parents or caregivers how to recognize and identify distress early on-when there’s time to intervene and prevent more serious issues.
Teaching families how to identify babies’ baseline health statuses also helps to successfully wean children from therapies, including oxygen and diuretics, according to Rhein. He explains it to families this way: He gives them the example that if he were to tell them it’s important for their babies’ medical management to know what their babies wore every day, how would they do it? Chances are, they’d take a minute or 2 each day, with each changing, to write down what their babies were wearing.
“What we try to do is tell families how to do that for breathing status,” Rhein says. “It’s that easy. It’s just writing down some simple observations. We simply help families understand how important this is.”
One of the things Rhein and his staff tell each family is to learn respiratory rate by counting how fast the baby breathes in 10 seconds.
“If they do it multiple times a day, multiple days in a row, and write it down, they’re going to be professionals at knowing their baby’s breathing rate at baseline,” he says. “Then, if I remove a therapy, or if the baby is getting sick, they can again count their baby’s breathing rate and let me know if they think it’s different or the same.”
Rhein also asks families to count how long it takes their babies for a normal feeding. “We know that if they have to choose between breathing and feeding, babies always choose breathing. Taking longer to feed can be a very early sign of respiratory distress,” he says.
Compliance isn’t a problem. In Rhein’s experience, families might have different levels of ability and varying cultural and economic backgrounds, but all share a dedication to seeing to it that their babies get well.
“I don’t have a study that shows compliance, but we do have data on our results. We have lowered rates of rehospitalization compared with national averages, and we have very good respiratory outcomes. So, we can’t tell if it’s 1 specific aspect of our program (nutritional or the teaching that we do), but we know that we’re happy with the results.”
Researchers have found that good nutrition is pivotal in helping BPD children outgrow their breathing problems, and getting the needed nutrition is especially tricky in infants with BPD.11,12
“It’s 1 of the things where we know from studies . . . that growing too fast and growing too slow are both problematic. So, we really need to make sure that these kids are growing at just the right rate for their brain development and for their respiratory health,” Rhein says.13
Rhein also says that having a dedicated nutritionist on staff in the Boston Children’s program helps families and doctors better monitor nutritional status.
“A lot of these babies go home on supplemented calories, formula, or breast milk. There are a variety of supplements. When to go up or go down on supplements is 1 example that requires expertise. That’s 1 of the reasons we pushed very hard to have a dedicated nutritionist in our program,” he says.
Babies with BPD are often socially isolated because they are so vulnerable to respiratory infections, which puts them at risk for developmental issues.14 Also, because of their children’s need for social isolation, families tend to feel alone.
Many families who are socially isolated can’t share much-needed parenting skills with other parents. After all, Rhein says, there are questions about caring for these children that even he and his colleagues can’t answer.
“I had a family whose baby was on nasal cannula oxygen. The baby was old enough to roll over, and the parents were concerned about how to keep the baby from tangling in the tubing. The NICU staff doesn’t know because they don’t take care of babies who roll over. If they ask me, I don’t take care of babies at home who have oxygen. But you know who knows the answer to that and other questions? The other parents, who have already gone through that experience,” Rhein says.
To help bring families and their babies together in a safe environment, Boston Children’s runs a monthly get-together. It’s comparatively much safer, because of the precautions at the hospital, including dedicated space where sick children have not been; individual toys for each patient to avoid sharing germs; and a shared focus on infection control among all the parents, according to Rhein. In addition, it fills an all-important need to socialize, he says.
Rhein says rehospitalization rates impact children with BPD, but questions remain about how much.
“One question is, are rehospitalizations in and of themselves a marker of lung disease? Secondly, every time they come into the hospital, is that causing more injury for the long-term?” he says.
Research indicates rehospitalizations come with health and developmental consequences.
“Every time babies come into the hospital, they’re in a critical window in their life when they should be learning and developing their brains. Coming into the hospital usually sets them back. If they come to the hospital, they’re usually not feeding in the same way, so their growth may suffer,” Rhein says. “If you need to come in the hospital, you should, but if we can prevent you from becoming sick enough to need the hospital in the first place, that may help your long-term health and put it on the right path of growth and developmental stimulation.”15
To optimize the care of children in the community with BPD, pediatricians should maintain good communications with specialists, according to Rhein.
“No single center can do it all. I’m very grateful to the primary care pediatricians who are really on the front lines with these babies,” he says. “I think they appreciate being able to refer in and get specialized advice from our clinic, and I appreciate the opportunity to collaborate with them in the care of these special families.”
Another tip: Don’t underestimate the effect of growth on babies with BPD. “Focusing on nutrition is a key part, in my opinion,” he says.
Finally, don’t underestimate the value of simple family education. “These families are incredibly resilient and we shouldn’t assume that they can’t do things. They are dedicated to their children. I’ve found when we ask them to do things and take responsibility for their child’s health, they do it and are successful,” Rhein says.
"The families are the ones doing all the hard work, after what is often a long and stressful NICU hospitalization. The least we as providers in the community can do is be available to help them in the next phase. We just have to provide them with some of the right tools, and I'm proud of the results that we can achieve together," he says.
1. American Lung Association. Understanding bronchopulmonary dysplasia (BPD). Available at: http://www.lung.org/lung-disease/bronchopulmonary-dysplasia/living-with-bronchopulmonary-dysplasia/understanding-bpd.html. Accessed December 9, 2014.
2. Groothuis JR, Makari D. Definition and outpatient management of the very low-birth-weight infant with bronchopulmonary dysplasia. Adv Ther. 2012;29(4):297-311.
3. Smith VC, Zupancic JA, McCormick MC, et al. Rehospitalization in the first year of life among infants with bronchopulmonary dysplasia. J Pediatr. 2004;144(6):799-803.
4. Chye JK, Gray PH. Rehospitalization and growth of infants with bronchopulmonary dysplasia: a matched control study. J Paediatr Child Health. 1995;31(2):105-111.
5. Ehrenkranz RA, Walsh MC, Vohr BR, et al; National Institutes of Child Health and Human Development Neonatal Research Network. Validation of the National Institutes of Health consensus definition of bronchopulmonary dysplasia. Pediatrics. 2005;116(6):1353-1360.
6. Rhein LM, Konnikova L, McGeachey A, Pruchniewski M, Smith VC. The role of pulmonary follow-up in reducing health care utilization in infants with bronchopulmonary dysplasia. Clin Pediatr (Phila). 2012;51(7):645-650.
7. March of Dimes. U.S. preterm birth rate hits Healthy People 2020 goal seven years early. Available at: http://www.marchofdimes.org/news/us-preterm-birth-rate-hits-healthy-people-2020-goal-seven-years-early.aspx#. Accessed December 9, 2014.
8. March of Dimes. About 450,000 babies are born too soon each year. Available at: http://www.marchofdimes.org/mission/prematurity-reportcard.aspx#. Accessed December 9, 2014.
9. Uberos J, Lardon-Fernandez M, Machado-Casas I, Molina-Oya M, Narbona-Lopez E. Nutrition in very low birth weight infants: impact on bronchopulmonary dysplasia. Minerva Pediatr. Nov 19, 2014. Epub ahead of print. Available at: http://www.ncbi.nlm.nih.gov/pubmed/25407225. Accessed December 9, 2014.
10. Giannì ML, Roggero P, Colnaghi MR, et al. The role of nutrition in promoting growth in pre-term infants with bronchopulmonary dysplasia: a prospective non-randomised interventional cohort study. BMC Pediatr. 2014;14:235.
11. Smithers LG, Lynch JW, Yang S, Dahhou M, Kramer MS. Impact of neonatal growth on IQ and behavior at early school age. Pediatrics. 2013;132(1):e53-e60.
12. Jeng SF, Hsu CH, Tsao PN, et al, Bronchopulmonary dysplasia predicts adverse developmental and clinical outcomes in very-low-birthweight infants. Dev Med Child Neurol. 2008;50(1):51-57.
13. Kwinta P, Lis G, Klimek M, et al. The prevalence and risk factors of allergic and respiratory symptoms in a regional cohort of extremely low birth weight children (<1000 g). Ital J Pediatr.2013;39:4.
Ms Hilton is a medical writer who has covered health and medicine for 25 years. She resides in Boca Raton, Florida. She has nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article.