When children with severe or complex asthma reach the age of 18, they may face the daunting task of having to leave their pediatric asthma care team behind and find new health care providers to help them manage their complex condition in adulthood. This transition can leave some young adults vulnerable to interruptions in care, posing risks to their health and wellbeing; however, at the University of Colorado Anschutz Medical Campus, a team of health care providers works to ensure that doesn’t happen.
Started in 2020 by William Anderson, MD, associate professor in the Section of Allergy and Immunology in the CU Department of Pediatrics, the Asthma Self-Care, Education, and Transition (ASCEnT) Program connects with pediatric patients receiving asthma care at Children’s Hospital Colorado to start developing a plan of action for when they become adults, helping them learn how to navigate the health care system and connect with the providers they want to go to as adults.
The program is made up of providers like Suzanne Ngo, MD, an allergist and immunologist for children and adult patients who is passionate about helping ensure the transition is easy and that patients feel better equipped to manage their care moving forward.
“We are the only program in the state that specifically helps with this transition for patients with asthma,” says Ngo, an assistant professor in the Division of Pulmonary, Allergy, and Critical Care Medicine in the CU Department of Medicine. “And we don’t just transfer a patient from one doctor to another. We also educate patients so we can empower them to learn how to make their own health care decisions. That way, we hopefully don’t have any gaps of care or issues during this vulnerable age range.”
More than 26.7 million people in the United States have asthma — over 4.5 million children and 22.2 million adults — according to the Centers for Disease Control and Prevention; however, the way that asthma affects people can vary based on the phenotype, mechanism, severity, and time course.
“In some patients, asthma affects them more when they are children and they tend to get better as they age. In others, we see conditions worsen as they become young adults. And there are some people who get asthma as an adult,” Ngo says. “Asthma takes a lot of consistent management to keep under control, especially because our goal is to avoid those asthma exacerbations where people struggle to breathe so much that they have to be admitted to the hospital.”
The approach to treating asthma is similar regardless of age. Physicians like Ngo will first determine how severe a patient’s asthma is and tailor their medications accordingly, with the first line of treatment typically being inhaled steroids. For patients with severe asthma, they may need injectable medications that help target the types of inflammation that can drive asthma attacks.
“Even for those with controlled asthma, they usually have to be seen every six months by their specialist. Patients with asthma that is not well controlled should, at the very least, come in every three months,” she says. “If they are experiencing asthma flares and we need to change their medication, then I may see a patient once a month.”
Given the complexity of treating chronic conditions, Children’s Hospital Colorado established the Improving Pediatric to Adult Care Transitions (ImPACT) Program to help young people and their families navigate these transitions of care. To accomplish this, providers will educate patients on how to take ownership of their health care, integrate technological tools into the electronic medical record system to ensure a seamless transition of care, and offer resources to patients who need additional support.
The ASCEnT Program, which is part of the ImPACT Program, was created to specifically help patients with asthma go through this transition process, Ngo explains. The ASCEnT team includes a dedicated nurse coordinator, Laura Payne, MPH, RN, CPN, who identifies patients who would benefit from this program.
“We’re primarily working with our patients who have moderate-to-severe asthma who are seeing a subspecialist to manage their asthma,” Ngo says. “We start introducing the idea of getting prepared for this transition for patients between the ages of 12 and 14 because we want it to be a gradual process that patients feel prepared for by the time they reach adulthood.”
Under the ASCEnT Program, when a patient is 16 years old, a nurse coordinator will meet with the patient during their clinic visit with their asthma specialist. During this visit, patients will fill out a validated questionnaire that gauges how prepared the patient is for the transition, asking if patients know how to find an adult provider, manage their medications, manage an emergency if they have a bad asthma flare, and navigate the health care system.
From there, providers like Anderson, Payne and Ngo will be able to prioritize educating patients on the topics they care most about and are the least knowledgeable on. They also help ensure that the patient’s new medical team is given all the background information and medical records needed to make a seamless transition.
“Our team helps determine which doctors are best suited for different patients and can help make sure the logistics of transitioning their care are easy to manage,” Ngo says. “Our goal isn’t just helping patients find a new doctor so that they don’t have any gaps in their care. We also prioritize the educational piece of teaching these young patients how to manage their asthma.”
“A lot of families I’ve worked with are very grateful for this program because they’re often facing a lot of uncertainty with the transition,” she adds. “We’re there to help them through that process and any barriers they may face.”
To continue improving the ASCEnT program, Ngo is currently collecting feedback from patients who participated in the program and have transferred to an adult provider. These surveys aim to assess how valuable the program was for these patients and areas for improvement.
“My big interest is how much of this work we may need to continue on the adult side after the transition of care. I’m curious if there are resources we should offer to these patients who may now be seeing an adult provider but who are still not fully confident in their ability to manage their health issues,” she says.
Ngo is also analyzing data to assess whether the ASCEnT program has improved the health outcomes for patients who participated in the program, looking at factors such as emergency room visits due to asthma flares and the number of patients who currently see an adult provider.
“For patients with chronic diseases like asthma, as they become adults, we sometimes see blips in their care and risks for asthma flares and missed treatments. We want to make sure this doesn’t happen to our patients, and they have continuity in their care,” she says. “There has been less research on this with asthma, even though it’s the most common chronic condition of this age range. We’re hoping to investigate this and really establish an understanding of the risks that are involved and how much burden there is at this time in patients’ lives.
“And beyond that, we want to learn what are good strategies to make sure our patients are getting the appropriate care they need.”