Defining and Promoting Pediatric Pulmonary Health: A NHLBI Workshop Executive Summary

Respiratory and sleep health refers to physical, psychosocial, and behavioral well-being, not only the absence of disease. Maintenance of respiratory and sleep health necessitates monitoring and identifying early warning signs of an alteration in status before the development of recognizable disease. Many pulmonary and sleep disorders that come to medical attention in later childhood and adulthood often have their origins traced back to early childhood, at a time when clinical manifestations may be subtle. Early detection of aberration and identifying “at risk” individuals are of paramount importance to mitigate disease progression. Early detection can be best achieved by bidirectional collaboration between primary care providers and subspecialists.

The Division of Lung Diseases, National Heart Lung and Blood Institute convened a multidisciplinary workshop entitled Defining and Promoting Pediatric Pulmonary Health (DAP³H) in March 2021. The workshop focused on describing the current status, identifying knowledge gaps, and setting future research direction in the definition, standardization, optimization of metrics, and evaluation of pediatric pulmonary and sleep health, with the goal of enhancing respiratory and sleep evaluation in the immediate newborn period, early and late childhood, and adolescence. This multidisciplinary workshop builds upon a previous workshop sponsored by the National Heart Lung and Blood Institute in 2012 that had identified the need for better definitions of lung health aimed at facilitating recognition of early warning signs of disease with the goal of enhancing preemption and prevention.¹  The recent workshop was a unique collaboration between generalists and subspecialists, both of whom were part of subcommittees that set the agenda, presented, and led discussions at the workshop. This generalist-subspecialist collaboration is imperative to identify children at risk for developing respiratory and sleep related diseases.

In approaching this topic, one must consider normal structure and function of the airways and lungs at birth and how these change as the child develops and grows. How normal lung and airway growth is disrupted depends upon the stage of development at which the underlying pathophysiology occurs. Identifying the origins of chronic lung and airways disease early allows therapies to be initiated sooner, which should slow disease progression and improve respiratory function with no or minimal impairment. Ultimately, the hope would be to prevent the development of chronic lung and sleep disorders altogether if the origins of disease are detected early enough. The goals of the workshop were to elucidate what constitutes pulmonary and sleep health in childhood, identify existing and novel metrics and measures, which need validation at different ages in the pediatric population, and describe the challenges and opportunities in widespread implementation and adherence to assessments of pediatric pulmonary and sleep health in the community. The workshop was divided into 5 sessions: developing biomarkers for pulmonary health, sleep and ventilatory control, lung function and structure in the developing child, patient reported outcomes and respiratory health questionnaires, and the community perspective (Fig 1). Summaries of each session in the workshop are contained in this supplemental issue of Pediatrics.^2–6 

Recognizing that broad goals from discovery to implementation would need a multidisciplinary and collaborative approach, the workshop brought together 29 panelists consisting of community pediatricians, academic primary care providers, pediatric pulmonologists and sleep physicians, psychologists, researchers, and experts in patient and family perspectives. In keeping with the need highlighted by the recent coronavirus disease 2019 pandemic, emphasis was placed on the perspective of underserved communities, inclusion of early-stage investigators in the field, and exploration of cross-disciplinary partnerships. The impact of racial, ethnic, gender, financial, geographic, educational, and health care disparities were described. Workshop attendees considered the opportunities and challenges in instituting widespread screening programs for lung and sleep disorders, including how best to identify patients at highest risk for developing disease and determine which screening tests could be implemented in busy outpatient clinics to evaluate high-risk patients without disrupting clinic flow.

To promote lung and sleep health throughout life, subcommittee members made several specific recommendations that can be found in the summaries. Most of these recommendations fall under several broad categories:

• Develop tools and techniques to evaluate lung and sleep health over the age continuum in children

• Create collaborative, multidisciplinary clinical care and research networks with community pediatricians, academic pediatricians, pediatric pulmonology and sleep medicine subspecialists, ancillary health care providers, and patients and families

• Build large birth cohorts that are ethnically and racially diverse to systematically evaluate the impact of environmental, genetic, metabolic, and immunologic factors on lung and sleep health

• Promote inclusion and retention of under-represented, diverse populations into observational studies and clinical trials

• Include patient and family perspectives into care and research

• Expand biobanks and databanks to include biologic specimens from multiple sources and data from environmental exposure history, lung function tests, other clinical laboratory tests, and radiologic studies

• Establish ongoing educational and training programs between academic and community partners focused on lung and sleep health

• Use the principles of implementation science to promote research that evaluates the feasibility, implementation, acceptability, and utility of incorporating screening tools for lung and sleep health into primary pediatric practices

• Incorporate screening test results into the electronic medical record so that the results can be shared efficiently between stakeholders

• Integrate research protocols into general pediatric clinics without disrupting clinic flow

• Answer research questions pertaining to potential lung and sleep heath screening tests such as: Which diseases should be screened? Who should be screened? What screening method should be used? When should screening tests be initiated? How often should screening tests be administered? Where should screening take place (home, school, community centers, primary care clinics, subspeciality clinics)?

• Define the ideal screening test for an outpatient practice: safe, noninvasive, performed quickly, technically simple, minimally burdensome for the patient and provider, clinically relevant, broadly applicable across age groups and disease severities, relatively inexpensive, sensitive, specific, reproducible, validated in diverse populations, allows for serial evaluations, easy to analyze, does not disrupt clinic flow, and equitable.

In summary, the workshop participants highlighted the urgency and importance of a multidisciplinary approach to pressing research questions in the definition of pediatric pulmonary and sleep health and the recognition of early warning signs of disease. Continued dialogue across specialties, academia, and the community was emphasized through future workshops and conferences with the goal of fostering collaborative, impactful team-based research. This workshop represents the first step in developing collaborative and integrative research endeavors among general pediatric and pulmonary or sleep disciplines that will include community pediatricians, pediatric pulmonologists, sleep experts, and patients and families.