When a child is born with chronic lung disease of prematurity, or bronchopulmonary dysplasia (BPD), the experts at Children’s Hospital of Philadelphia (CHOP) are there to ensure every patient is on the path that maximizes lung function and health — not just during infancy, but well into childhood and beyond.
Among those experts is Associate Chief of the Division of Pulmonary and Sleep Medicine, Sharon McGrath-Morrow, MD, MBA. She’s also the Director of CHOP’s Post-preemie Lung Disease Clinic, an outpatient clinic for formerly preterm children that delivers a combination of comprehensive clinical respiratory care and opportunities to participate in research focused on precision-based therapies and interventions.
Dr. McGrath-Morrow recently shared details about her holistic approach to outpatient care supported by a multidisciplinary model, findings from the clinic’s lung development and recovery research, and her team’s efforts to share their longitudinal follow-up data with the goal to improve chronic lung disease care on an international scale.
An Overview of the Clinic
What makes CHOP’s Post-preemie Lung Disease Clinic distinct in its approach to caring for children with chronic lung disease of prematurity?
Dr. McGrath-Morrow: Our clinic seeks to care for formerly preterm children who may be experiencing respiratory issues, regardless of gestational age and severity in the NICU. Using a holistic care approach, we address the respiratory health of patients, but we also support other aspects of healthcare including social needs and growth issues.
How does your team integrate care across pulmonology, neonatology and other specialties?
Dr. McGrath-Morrow: Many of the physicians who care for formerly preterm children in the outpatient setting also see patients as part of our BPD/NICU inpatient consult team. This enables us to get to know many of our patients before they come to their first outpatient visit.
How does the multidisciplinary model support continuity of care from the NICU through childhood and adolescence?
Dr. McGrath-Morrow: In the post-preemie clinic, our goal is to address chronic and acute respiratory symptoms throughout all of childhood. We continue to monitor lung function and target modifiable factors that can adversely affect lung function in later life. Many of our patients are seen by our inpatient BPD/NICU team prior to NICU discharge and participate in the discharge planning, which allows for continuity of care from the inpatient to outpatient realm.
Clinical Insights and Emerging Care Trends
What clinical trends are you seeing among former preemies as they grow — and how are those trends shaping your care strategies?
Dr. McGrath-Morrow: Our outpatient clinic focuses on ensuring that formerly preterm children are receiving adequate treatment for their airway symptoms, that they are growing well, and are being offered care for vaccine-preventable diseases such as respiratory syncytial virus.
Using a shared decision-making care model, we wean therapies as appropriate and provide guidance on when to escalate or initiate airway therapies at the first sign of illness to minimize emergency room visits and hospitalizations. Formerly preterm children with a family history of asthma may be at higher risk for respiratory exacerbation due to viral illnesses and environmental triggers. We make sure that these children are recognized and are being treated appropriately for their underlying small airway symptoms to optimize exercise tolerance, improve quality of life, and prevent severe respiratory exacerbations.
As a result of this, many of our formerly preterm children are doing well. If we can optimize lung growth and keep children healthy particularly during the preschool years, they often continue to thrive throughout childhood and adolescence.
Research and Innovation
Can you share an overview of the current research underway within CHOP’s Post-preemie Lung Disease Clinic?
Dr. McGrath-Morrow: Families attending our outpatient clinics are invited to participate in a natural history cohort. Currently, our cohort has more than 900 children who we follow longitudinally. We’ve been able to assess long-term respiratory health outcomes and determine effectiveness of therapies in our formerly preterm children.
How is this research helping to bridge the gap between early-life lung injury and long-term outcomes?
Dr. McGrath-Morrow: We have found that after the NICU, formerly preterm children who experience recurrent respiratory insults or adverse exposures are more likely to have persistent respiratory issues and altered lung function trajectories in later childhood.
Based on our studies we have identified several other modifiable factors that are associated with long-term outcomes. Currently we recommend, if possible, delaying daycare attendance for the first two years of life, and avoidance of any secondhand smoke exposure. Furthermore, we ask families to minimize sick contact exposures and environmental exposures that trigger respiratory symptoms. We encourage immunoprophylaxis for vaccine-preventable diseases, we monitor weight and linear growth and make efforts to address social needs. Through our work, we have identified that these potentially modifiable factors can influence lung growth and health outcomes long after a child is discharged from the NICU.
What are some of the key questions your research is aiming to answer about lung development and recovery in this population?
Dr. McGrath-Morrow: We have a federally funded grant that is focused on studying lung function, exercise tolerance, cardiovascular function and metabolism in school-age, formerly preterm children of low birth weight. We and others have observed that some formerly preterm children go on to develop worsening respiratory problems, metabolic syndrome and systemic and pulmonary hypertension with increasing age. We are attempting to understand why this occurs and to identify which formerly preterm children are at highest risk for these health issues, so that we can intervene earlier to prevent adverse outcomes.
How is your team using data from longitudinal follow-up to inform both clinical management and future studies?
Dr. McGrath-Morrow: We have been using our longitudinal follow-up data to disseminate information to our colleagues across the United States through peer-reviewed publications and through national talks to help improve the outpatient care of formerly preterm children. Our data has also informed future studies through more in-depth phenotyping, allowing for personalized treatment approaches for children with variable disease phenotypes.
We have also reported back to our families by providing brief abstracts describing our published data and offer informational materials for caregivers of children with chronic lung disease of prematurity. We have one pamphlet that focuses on the preschool years and another for school age and adolescent children.
Are there any emerging therapies or interventions being studied that show promise for improving outcomes in children with post-prematurity respiratory disease?
Dr. McGrath-Morrow: By performing more in-depth immune and pulmonary function phenotyping we hope to provide precision-based therapies to our patients and thus improve outcomes and quality of life. For instance, children with Th2 immune phenotypes may respond to specific biologics, while children with small airflow obstruction may respond better to long-acting combination inhaled medications. A subset of children who have poor immune responses may benefit from the boosting of their immune system.
Collaboration, Coordinated Care and Outreach
Collaboration seems central to this work. Can you talk about how your team partners with other CHOP programs or external research networks?
Dr. McGrath-Morrow: Within CHOP, we work closely with neonatology, cardiology, and developmental medicine to ensure that our patients receive coordinated, longitudinal care. Externally, we’re part of several national and international research organizations, including The BPD Collaborative, which focuses on BPD and long-term outcomes in preterm infants. These collaborations allow us to pool data, share methodologies, and standardize approaches to care.
What insights have you gained about the long-term respiratory trajectory for children born preterm, and how might this inform guidelines or best practice?
Dr. McGrath-Morrow: We have found that gestational age and BPD severity in the NICU doesn’t always predict long-term respiratory health outcomes or lung function trajectories. For instance, we have noted that some children with severe BPD have outcomes that are comparable to children with mild or no BPD. We have also identified modifiable factors that when addressed, can improve long-term outcomes in this patient population.
How can referring providers or other institutions collaborate with your team — whether through research, patient referral or shared learning opportunities?
Dr. McGrath-Morrow: Healthcare providers can refer their patients and families to CHOP’s multidisciplinary Post-preemie Lung Disease Clinic, where we provide both clinical care and opportunities for research participation. On our website we have caregiver informational pamphlets that can be used by healthcare providers caring for formerly preterm children.
Looking ahead, what are the biggest opportunities for innovation in post-preemie lung disease research and care?
Dr. McGrath-Morrow: There’s a growing opportunity to integrate family-centered and community-based approaches to long-term care, recognizing that social and environmental factors play a significant role in respiratory health outcomes.
Learn more about the clinical care and research of CHOP’s Post-preemie Lung Disease Clinic.
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When a child is born with chronic lung disease of prematurity, or bronchopulmonary dysplasia (BPD), the experts at Children’s Hospital of Philadelphia (CHOP) are there to ensure every patient is on the path that maximizes lung function and health — not just during infancy, but well into childhood and beyond.
Among those experts is Associate Chief of the Division of Pulmonary and Sleep Medicine, Sharon McGrath-Morrow, MD, MBA. She’s also the Director of CHOP’s Post-preemie Lung Disease Clinic, an outpatient clinic for formerly preterm children that delivers a combination of comprehensive clinical respiratory care and opportunities to participate in research focused on precision-based therapies and interventions.
Dr. McGrath-Morrow recently shared details about her holistic approach to outpatient care supported by a multidisciplinary model, findings from the clinic’s lung development and recovery research, and her team’s efforts to share their longitudinal follow-up data with the goal to improve chronic lung disease care on an international scale.
An Overview of the Clinic
What makes CHOP’s Post-preemie Lung Disease Clinic distinct in its approach to caring for children with chronic lung disease of prematurity?
Dr. McGrath-Morrow: Our clinic seeks to care for formerly preterm children who may be experiencing respiratory issues, regardless of gestational age and severity in the NICU. Using a holistic care approach, we address the respiratory health of patients, but we also support other aspects of healthcare including social needs and growth issues.
How does your team integrate care across pulmonology, neonatology and other specialties?
Dr. McGrath-Morrow: Many of the physicians who care for formerly preterm children in the outpatient setting also see patients as part of our BPD/NICU inpatient consult team. This enables us to get to know many of our patients before they come to their first outpatient visit.
How does the multidisciplinary model support continuity of care from the NICU through childhood and adolescence?
Dr. McGrath-Morrow: In the post-preemie clinic, our goal is to address chronic and acute respiratory symptoms throughout all of childhood. We continue to monitor lung function and target modifiable factors that can adversely affect lung function in later life. Many of our patients are seen by our inpatient BPD/NICU team prior to NICU discharge and participate in the discharge planning, which allows for continuity of care from the inpatient to outpatient realm.
Clinical Insights and Emerging Care Trends
What clinical trends are you seeing among former preemies as they grow — and how are those trends shaping your care strategies?
Dr. McGrath-Morrow: Our outpatient clinic focuses on ensuring that formerly preterm children are receiving adequate treatment for their airway symptoms, that they are growing well, and are being offered care for vaccine-preventable diseases such as respiratory syncytial virus.
Using a shared decision-making care model, we wean therapies as appropriate and provide guidance on when to escalate or initiate airway therapies at the first sign of illness to minimize emergency room visits and hospitalizations. Formerly preterm children with a family history of asthma may be at higher risk for respiratory exacerbation due to viral illnesses and environmental triggers. We make sure that these children are recognized and are being treated appropriately for their underlying small airway symptoms to optimize exercise tolerance, improve quality of life, and prevent severe respiratory exacerbations.
As a result of this, many of our formerly preterm children are doing well. If we can optimize lung growth and keep children healthy particularly during the preschool years, they often continue to thrive throughout childhood and adolescence.
Research and Innovation
Can you share an overview of the current research underway within CHOP’s Post-preemie Lung Disease Clinic?
Dr. McGrath-Morrow: Families attending our outpatient clinics are invited to participate in a natural history cohort. Currently, our cohort has more than 900 children who we follow longitudinally. We’ve been able to assess long-term respiratory health outcomes and determine effectiveness of therapies in our formerly preterm children.
How is this research helping to bridge the gap between early-life lung injury and long-term outcomes?
Dr. McGrath-Morrow: We have found that after the NICU, formerly preterm children who experience recurrent respiratory insults or adverse exposures are more likely to have persistent respiratory issues and altered lung function trajectories in later childhood.
Based on our studies we have identified several other modifiable factors that are associated with long-term outcomes. Currently we recommend, if possible, delaying daycare attendance for the first two years of life, and avoidance of any secondhand smoke exposure. Furthermore, we ask families to minimize sick contact exposures and environmental exposures that trigger respiratory symptoms. We encourage immunoprophylaxis for vaccine-preventable diseases, we monitor weight and linear growth and make efforts to address social needs. Through our work, we have identified that these potentially modifiable factors can influence lung growth and health outcomes long after a child is discharged from the NICU.
What are some of the key questions your research is aiming to answer about lung development and recovery in this population?
Dr. McGrath-Morrow: We have a federally funded grant that is focused on studying lung function, exercise tolerance, cardiovascular function and metabolism in school-age, formerly preterm children of low birth weight. We and others have observed that some formerly preterm children go on to develop worsening respiratory problems, metabolic syndrome and systemic and pulmonary hypertension with increasing age. We are attempting to understand why this occurs and to identify which formerly preterm children are at highest risk for these health issues, so that we can intervene earlier to prevent adverse outcomes.
How is your team using data from longitudinal follow-up to inform both clinical management and future studies?
Dr. McGrath-Morrow: We have been using our longitudinal follow-up data to disseminate information to our colleagues across the United States through peer-reviewed publications and through national talks to help improve the outpatient care of formerly preterm children. Our data has also informed future studies through more in-depth phenotyping, allowing for personalized treatment approaches for children with variable disease phenotypes.
We have also reported back to our families by providing brief abstracts describing our published data and offer informational materials for caregivers of children with chronic lung disease of prematurity. We have one pamphlet that focuses on the preschool years and another for school age and adolescent children.
Are there any emerging therapies or interventions being studied that show promise for improving outcomes in children with post-prematurity respiratory disease?
Dr. McGrath-Morrow: By performing more in-depth immune and pulmonary function phenotyping we hope to provide precision-based therapies to our patients and thus improve outcomes and quality of life. For instance, children with Th2 immune phenotypes may respond to specific biologics, while children with small airflow obstruction may respond better to long-acting combination inhaled medications. A subset of children who have poor immune responses may benefit from the boosting of their immune system.
Collaboration, Coordinated Care and Outreach
Collaboration seems central to this work. Can you talk about how your team partners with other CHOP programs or external research networks?
Dr. McGrath-Morrow: Within CHOP, we work closely with neonatology, cardiology, and developmental medicine to ensure that our patients receive coordinated, longitudinal care. Externally, we’re part of several national and international research organizations, including The BPD Collaborative, which focuses on BPD and long-term outcomes in preterm infants. These collaborations allow us to pool data, share methodologies, and standardize approaches to care.
What insights have you gained about the long-term respiratory trajectory for children born preterm, and how might this inform guidelines or best practice?
Dr. McGrath-Morrow: We have found that gestational age and BPD severity in the NICU doesn’t always predict long-term respiratory health outcomes or lung function trajectories. For instance, we have noted that some children with severe BPD have outcomes that are comparable to children with mild or no BPD. We have also identified modifiable factors that when addressed, can improve long-term outcomes in this patient population.
How can referring providers or other institutions collaborate with your team — whether through research, patient referral or shared learning opportunities?
Dr. McGrath-Morrow: Healthcare providers can refer their patients and families to CHOP’s multidisciplinary Post-preemie Lung Disease Clinic, where we provide both clinical care and opportunities for research participation. On our website we have caregiver informational pamphlets that can be used by healthcare providers caring for formerly preterm children.
Looking ahead, what are the biggest opportunities for innovation in post-preemie lung disease research and care?
Dr. McGrath-Morrow: There’s a growing opportunity to integrate family-centered and community-based approaches to long-term care, recognizing that social and environmental factors play a significant role in respiratory health outcomes.
Learn more about the clinical care and research of CHOP’s Post-preemie Lung Disease Clinic.
Recommended reading
Caring for your Child with Chronic Lung Disease Related to Prematurity
This handbook includes educational information on chronic lung disease related to prematurity. Available in English and Spanish.
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Post-preemie Lung Disease Clinic