As of 2022, approximately 7.3% of children in North Carolina had asthma, according to the National Survey of Children’s Health data. Asthma’s symptoms, including coughing, wheezing, shortness of breath and fatigue, correlates to underperformance and absence from school, difficulty sleeping, long-term structural changes to the lungs, more frequent visits to the emergency department (ED) and more hospital admissions. For parents, the worry of managing their child’s symptoms, as well as the strain on finances and work, increases the burden of care. This is especially true in rural counties, where access to pediatricians and pulmonary specialists is limited. ECU Health’s Pediatric Asthma Program seeks to address these health disparities through a holistic approach, and the Roanoke-Chowan Foundation Grant has provided funding for more than 20 years that supports the program’s mission.
ECU Health’s Pediatric Asthma Program, established in 1995, has grown to provide targeted services in 29 counties across eastern North Carolina, including Bertie, Hertford, Gates and Northhampton. Emily Wood, and a respiratory care manager with the program, serves these rural counties by providing asthma education to children and their families, conducting school visits in collaboration with school nurses, giving out asthma supplies, conducting fractional exhaled nitric oxide (FeNo) or spirometry testing at regular intervals and providing medication support.
The way Wood ensures that happens is by meeting the kids and their parents where they are. “Transportation is a big issue in these areas,” she said.
“Parents have to take time off from work and lose income, and they may not have the means to get to a clinic if it’s 30 or more minutes away. Other counties have access to a primary care physician (PCP) clinic or a hospital, but here we don’t have that close by. We had three pediatricians but one just retired, and these kids must find somewhere else to go.”
Wood said she has worked with her team to secure new physicians for these displaced children so they keep up on their regular checkups. In the meantime, this shortage makes it all the more important for her to see these children virtually, at their homes or at their schools to bridge the gap. “Some of the kids with more severe cases I’ll have to follow more closely, since it’s hard for them to get into a PCP office,” she said.
“Emily knows this area, understands the patients’ unique needs and spends countless hours partnering with community stakeholders and fighting for the well-being of the patients and their families that she cares for,” said Sue Anne Pilgreen, manager of the Pediatric Asthma Program.
The Roanoke-Chowan Foundation, founded in 1997, has helped Wood and the program’s team achieve their objectives by providing grant support. The Foundation’s mission is to meet health and wellness needs of the Roanoke-Chowan communities in Bertie, Hertford, Gates and Northampton counties through grants, and since 1998, the Foundation has given more than $15.2 million in more than 100 grants to local organizations, including ECU Health Roanoke-Chowan Hospital and the ECU Health Wellness Center – Ahoskie. This year, the Foundation granted the Pediatric Asthma Program nearly $65,0000.
ECU Health’s Pediatric Asthma Program has received grant funding from the Foundation for more than 20 years, without which, Wood said, she would not be able to provide her services to those counties. “The Foundation money eliminates barriers by allowing me to travel to patients’ homes, schools or meet with them virtually,” she said. It also allows her to provide customized services that meet the patients’ needs, including providing asthma supplies such as spacers, pillow and mattress encasements to reduce allergies and asthma-friendly cleaning supplies.
That’s a big deal, because when a child with asthma has an exacerbation, the only option for some families is to call an ambulance and go to a hospital – an added cost of money and time the families often can’t afford. Wood said she can often catch issues in their early stages and keep kids out of the hospital or even the doctor’s office. “There’s a high level of low income in this part of the state, and these are the patients who would otherwise fall through the cracks,” Wood said. “This funding allows me to do testing and check in on the kids. It’s important to make sure they have what they need.”
“For many years, the Roanoke-Chowan Foundation grant has provided funding that has played a pivotal role in meeting the pediatric needs for children living in Hertford, Gates, Bertie and Northampton counties,” Pilgreen added. “These are some of our most rural areas and having a dedicated respiratory care manager for those counties, and the funds to provide children with the supplies they need to better manage their symptoms, has been a game changer. Our partnership with the Foundation helps me breathe a little easier, because I know the board members genuinely care about their region and will do whatever it takes to ensure the health and wellness of the children living there.”
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ECU Health’s Pediatric Asthma Program, which started in 1995, aims to reduce emergency department (ED) and inpatient admissions for children with asthma, decrease school absenteeism and increase the quality of life for asthmatic children in eastern North Carolina. One of the key ways it accomplishes these goals is through partnerships with eastern North Carolina public schools.
The program serves 29 counties in eastern North Carolina, many of which include rural areas. Contracts with schools are established so that members of the program’s team can perform asthma tests, communicate with parents, connect with primary care physicians and help ensure kids have access to and are compliant with their medications.
Bailey Edwards, RRT, a respiratory care manager with the program, works with students from elementary age to high school. She’s worked with DF Walker Elementary School in Edenton, North Carolina for seven years, but recently the school hired a new school nurse.
Typically, Edwards works with the kids one at a time, but since school began in August, she has been trying out a different approach. “The nurse started grouping the kids with asthma together for our sessions,” she said. “They’re all in the same grade and even in the same class. They all know each other. Treating them together created a community for the kids, where they see they’re not alone with their challenges.”
During a session, Edwards listens to the child’s lung sounds and performs an assessment, including a fractional exhaled nitric oxide (FeNO) test, which determines how much lung inflammation is present and how well inhaled steroids suppress that inflammation. She also makes sure the kids have their medications at school, that the meds aren’t expired and they are using their spacer devices correctly. She always gets the kids to demonstrate their inhaler technique, too. “They’re kids,” she reminded. “They want to take their two puffs and go out and play, but we want to be sure they’re using the proper technique to get the correct amount of medication.”
An added bonus to the group sessions is that the kids help each other learn more about asthma and their treatments. “Kids can hear from their parents and the nurse and from me,” Edwards said. “But when they hear information from their friends, they tend to remember it. During our sessions, the kids are excited to show what they know. They are learning how to take care of themselves.”
Parents also have the consistency of getting the same information from multiple sources. “They hear from me and the nurse, and from their kids,” Edwards shared. “This is another piece of the puzzle with asthma because it changes from day to day. You can look great on a Tuesday and then be in the ED on Friday with a flare.” When parents are better informed about their child’s disease process and how to recognize the signs and symptoms of a flare, they know how to handle it.
As a result, Edwards said the kids at DF Walker Elementary have flourished. “During the fall these kids were sick with the flu and strep and their FeNO tests weren’t good, but they kept working at it and trucking along, and now they’re testing normally and are so proud of themselves,” she said.
The statistics bear this out; in the past fiscal year, the program has seen increases in both school nurse referrals and PCP referrals, a 17.7% increase in school visits and a 21% increase in hours spent in clinic visits. “We are working hard to increase community numbers in order to decrease the number of kids in the hospital,” Sue Anne Pilgreen, manager for the Pediatric Asthma and Eastern Carolina Injury Prevention programs, said.
“School nurses are one of our strongest partners and patient advocates,” Pilgreen continued. “Especially in our rural counties where transportation and other social determinants of health can be a barrier. This partnership cuts down on the barriers and offers a win-win solution for everyone.”
Candace Cahoon, the respiratory care manager for the Pediatric Asthma Program, presented in July at the National Association of Asthma Educators (AAE) annual conference in Charlotte, North Carolina. The AAE is dedicated to providing quality education to a multidisciplinary group of asthma educators, and members include respiratory therapists, nurses, pharmacists, physicians, social workers, nurse practitioners and others. Cahoon’s presentation is one way the Pediatric Asthma Program at Maynard Children’s Hospital strives to share its research, lessons learned and processes for establishing a national model for a pediatric asthma program in the United States.
Cahoon has worked with ECU Health for 10 years, and during that time she has continued her education from a bachelor’s degree in sociology and an associate’s degree in respiratory therapy, to a master’s in health education and several certifications.
The Pediatric Asthma Program, which has grown from serving two counties in 1995 to 29 counties today, aims to reduce emergency department and inpatient admissions for children with asthma, decrease school absenteeism and increase the quality of life for children with asthma in eastern North Carolina. It does this by offering asthma testing, asthma education, tools to manage asthma, access to community resources and medication assistance. Their work with eastern North Carolina public schools has been a particularly effective way to reach children in rural North Carolina communities.
The poster Cahoon presented was the collaborative work of the Pediatric Asthma Program’s entire team, and the goal was to educate others on how to establish and support a pediatric asthma program. “We’re one of the best programs in the nation,” Cahoon said. “We are ahead of the game in terms of what we address for our patients with asthma. I go to conferences and say, ‘we know this; we do this,’ so we are well-known in the state and nationally.” Sue Anne Pilgreen, the manager of the Pediatric Asthma Program, said Cahoon is the “teacher” of their team. “She is a lifelong learner,” she said. “While the content development was a team effort, Candace pulled it all together, submitted the abstract and ultimately showcased our great work.”
Cahoon shared that the Pediatric Asthma Program is now establishing its own professional conference: Pediatric Asthma Management: Providing Holistic Care to Rural Communities. The conference is scheduled for February 28, 2025 and will be held at the Eastern Area Health Education Center, with virtual and in-person capability. Cahoon leads the committee responsible for making the conference a reality. “We want to show how we are touching every single aspect of an asthmatic patient’s life,” Cahoon said. “We have worked to expand and grow our program over the past few years, and we’ve had countless people ask us how we ‘found’ our success, especially in such a rural area,” Pilgreen added. In answer to that, the conference will address key components involved in implementing a comprehensive asthma program, while also discussing the clinical components of how the asthma team treats patients with asthma and helps them transition to home. “We’ll have a case study that goes through the hospital or clinic and has a breakdown of testing, education, home visits and environmental assessments for the patients,” Cahoon shared. The team will also talk about Single Maintenance and Reliever Therapy (SMART) as a new treatment option for patients with asthma that combines in a single inhaler both a corticosteroid and a long-acting beta-agonist so it can be used as a daily maintenance and as-needed relief of asthma symptoms. “The overarching objective for the conference is to help participants to utilize clinical knowledge, skills and expertise to provide holistic pediatric asthma care in the community,” Pilgreen said. “We know this starts in multiple places, including the hospital bedside, schools, and primary care provider offices.”
Ultimately, attending conferences, as well as establishing a conference of their own, highlights and shares the innovative work of the Pediatric Asthma Program at Maynard Children’s Hospital. “It shows that we’re here and we can do this together,” Cahoon said. “We are more than willing to show how over the last 20 years we have put this program in place.” Pilgreen agreed: “The design of our program is unique. Having the opportunity to present our program model and outcomes at a national conference not only elevates our work, but it also gives others the tools to replicate our model in their area. Our goal is to increase the quality of life for children with asthma, regardless of where they live.”
Asthma is a chronic lung disease that causes inflammation and swelling of the airways, and it affects an estimated five million children in the United States. The annual economic cost of asthma is more than $81.9 billion, and in children ages 5-17, asthma is the number one cause of school absenteeism and is among the top reasons for pediatric emergency department (ED) visits and hospital admissions.
World Asthma Day, which is May 7, seeks to raise awareness about asthma and improve the lives of all people with asthma. The ECU Health Regional Pediatric Asthma Program has similar goals, including to reduce ED and inpatient admissions for children with asthma, decrease school absenteeism and to increase the quality of life for asthmatic children in eastern North Carolina. It does this by offering asthma testing, asthma education, tools to manage asthma, access to community resources and medication assistance. Their work with eastern North Carolina public schools has been a particularly effective way to reach children in rural North Carolina communities.
The ECU Health Regional Pediatric Asthma Program, first begun in 1995, initially served Pitt and Greene counties. The pilot program was a partnership between the ECU Health Maynard Children’s Hospital, Community Health programs and a local elementary school. In 1996, the hospital was awarded a three-year grant from the Duke Endowment to further support the development of a comprehensive pediatric asthma program model that focused on children in grades K–5. As a result, they saw a 40% decrease in ED visits by school-aged children, a 50% decrease in student absences and a 50% decrease in inpatient cost of care for school-aged asthmatic children.
The program has since expanded to serve 29 counties in eastern North Carolina, and the number of public schools served has increased to 16.
“Our legal team and the school boards establish contracts with the elementary schools that renew on a rolling basis, and these allow us to do asthma testing, communicate with parents, liaise with the children’s PCPs, help the kids access medication and ensure they are compliant,” said Bailey Edwards, respiratory care manager of the Pediatric Asthma Program. A respiratory therapist who has worked at ECU Health for nine years, Edwards joined the team after working bedside in the NICU and PICU. “I saw so many kids with asthma come through our hospital with severe symptoms.”
In addition to Edwards, the team is comprised of a medical director, a social worker, nurses and three additional RTs. Edwards and the team have worked hard to grow and improve the Pediatric Asthma Program’s scope. Once a child is referred by the school nurse, an asthma care manager contacts the parents for the consent to treat.
“I call the parents and introduce myself, tell them about the program and learn more about their child,” Edwards said. Then, Edwards goes to that child’s school and performs a fractional exhaled nitric oxide (FeNO) test with the child, which determines how much lung inflammation is present and how well inhaled steroids suppress that inflammation.
“Some of these kids have outrageously high FeNOs but didn’t know it – they didn’t realize they couldn’t breathe,” Edwards said. “I call their doctor after my assessment and let them know my findings and recommendations. Then we figure out how to get the child what they need.”
Medications are a key part of the child’s treatment, but often their families cannot afford them.
“We provide medications for free or at low cost through a Children’s Miracle Network Hospitals grant. These medications can keep kids out of the hospital,” Edwards said.
The asthma team also provides education to the children and their parents about how to use the medications properly and potential causes of asthma exacerbations, such as tobacco smoke, dust, weather change or exercise. Once a treatment plan has been established, the asthma team follows up regularly for several months to ensure the child is compliant and the plan is effective.
“A month after initial treatment, I often hear parents say, ‘My kid is my kid again,’ and the child is laughing and playing because they can breathe,” Edwards said.
The program’s reach into public schools continues to grow; nine more schools have pending contracts.
“Our outreach to schools is based on what we see in the emergency departments and hospitals,” Edwards said. “Once we identify these problem areas, we connect with primary care physicians and school nurses to establish relationships.”
Many of those connections are made through lunch and learns the team hosts at regional schools.
“We bring treats and give an hour presentation about our services, update the school nurses on asthma guidelines and tell them how they can refer to us,” she said. Doing this has allowed the program to get many more referrals. “What started as a trickle has now turned into a waterfall.”
Going through the schools, said Sue Anne Pilgreen, manager for the Pediatric Asthma and Eastern Carolina Injury Prevention Programs (ECIPP), is the best way to connect with children in rural areas.
“It is impossible for us to physically be in every county, but our regional partnerships with school nurses and primary care providers gives us a direct pipeline to these children, and they know we are only a phone call or school visit away,” Pilgreen said. “We take a holistic approach in caring for our patients and their families, and sometimes that means helping them find better housing, reliable transportation or mental health resources. Looking at a family’s social determinants of health and helping to fill some of those gaps is a critical piece of caring for children in eastern North Carolina.”
This program aims to overcome the disparity in health care options for many of the children they treat.
“You see families with no food, no electricity and no ability to afford medicine,” Edwards said. “The parents don’t want to take their kids out of school to see the doctor because that child has already missed so much school because of their asthma, and they can’t afford to take the time off work themselves. This program strives to eliminate those barriers.”
While the public school outreach is a major part of the program, it’s not the only way they are treating asthmatic children in rural North Carolina.
“We work with Dr. William Wooten, our medical director, in having monthly pulmonary clinics that provide specialty level care in places that don’t have those resources,” Edwards said. “It started in Jacksonville and moved to Richlands. Now we have three clinics — Richlands Pulmonary Clinic, ECU Tarboro and ECU Edenton — and more locations requesting clinics of their own.”
Like the school outreach, these clinics reduce the burden for families who cannot travel farther away.
“We’re cutting into that lack of transportation or gas money,” Edwards said. “And in places that don’t have clinics, we are gaining more school contracts.”
Looking forward, Edwards said the next goal is to increase their scope of research and apply for more grant money.
“We applied for a Vision Grant, which we should hear about this summer, and we are exploring research options, especially ones that demonstrate the program’s efficacy,” Edwards said.
These efforts will support the program’s continued growth and help them meet new opportunities to better serve eastern North Carolina.
That’s important, Edwards said, because since 2021, they’ve seen a 378% increase in the number of referrals and a 312% increase in the number of cases managed. This program, she emphasized, is unique in that it helps children and their families understand asthma so they can control it and have a high quality of life.
“There’s no program in North Carolina like us, and a lot of people reach out to us about what we’re doing,” Edwards said.
The program is always looking for more effective and efficient ways to reach families, because children with asthma are often invisible to those not looking for specific symptoms.
“You see a kid at school who doesn’t speak above a whisper or doesn’t speak in complete sentences. They don’t run around and play. They look fine, but to someone who is trained, you can tell their asthma isn’t well controlled,” Edwards said. “Asthma can go dormant and then come back; it can silence you. But this program can set you up for the rest of your life.”