A 'Little Family' For High-Risk Asthma Patients
June 16, 2021
When Aquoia Johnson was growing up, her mother kept one hand on her daughter’s chest overnight to make sure she was still breathing.
“For about two years I didn’t sleep for more than an hour a night,” Tiffany Johnson says.
She had every reason to be scared.
One night when Aquoia was 8 years old, she woke up with a terrible cough and couldn’t catch her breath. At one point she passed out, prompting the family to call 911. After a hard night in the emergency department at their local hospital, Tiffany knew that Aquoia needed the expertise of a pediatric medical team. When Aquoia’s symptoms returned a week later, she insisted that the paramedics take her daughter to Riley Hospital for Children at Indiana University Health.
Aquoia was diagnosed with asthma, and it was severe. For the next two years, she had to be hospitalized at Riley about once a month to stabilize her breathing, often in the Pediatric Intensive Care Unit.
Although the exact cause of Aquoia’s asthma is still unknown, she and her mother have found great relief through ongoing treatment at Riley’s donor-supported High-Risk Asthma Clinic.
Led by Riley Pediatric Pulmonologist Nadia Krupp, M.D., Riley’s High-Risk Asthma team sees about 250 patients like Aquoia each year. A high-risk diagnosis means that patients face unique challenges related to asthma management and require more intensive treatment. Many of them have had life-threatening asthma exacerbations like Aquoia.
While anyone can be diagnosed with high-risk asthma, the condition disproportionately affects certain groups, including families with limited financial means. While this was not the case with Aquoia and her family, about 90 percent of the Riley clinic’s patients receive Medicaid. These families face a number of factors that make their asthma more difficult to manage, including food insecurity, inconsistent access to medication or transportation, or environmental exposures at home or at school. While not all children with high-risk asthma face these challenges, it is the team’s approach to fully evaluate all aspects of every child’s care.
“Financial and environmental factors are just as important as medical factors in controlling asthma. So we really have to treat the whole person, not just their asthma,” Dr. Krupp says.
With this in mind, the Riley team takes a comprehensive approach to meeting their patients’ needs. Clinic staff include pulmonologists, allergists, asthma educators, social workers, respiratory therapists, and a psychologist.
The result: Hospitalization typically drops by about 60 percent for patients cared for by the program. For Aquoia, she was finally able to go several years in a row without being hospitalized.
Part of this success comes from frequent clinic visits, and continual evaluation of potential risks. At every visit, families complete a screening about their home environment and factors that can trigger an asthma attack. They’re asked questions about whether they’ve seen evidence of pests, if they have carpet and access to a vacuum, whether they’ve noticed any leaks that need fixing, and whether they have enough to eat.
Close to 50 percent need some kind of intervention. With funding from Riley Children’s Foundation, clinic staff might provide families with a vacuum, mouse traps or supplies like hypoallergenic bedding. In other instances, they may engage free legal support to push a landlord to make necessary repairs or address problems like mold, or connect them to the Riley Food Pantry or community nutrition resources. The team psychologist, social worker and nursing staff are also instrumental in working together to get kids back to school, and back to their desired activities safely.
Children with high-risk asthma are at heightened risk for mental health conditions, in part because of fears about future asthma attacks. But that’s only one reason. Inflammation related to asthma may also play a role in how the brain behaves. For this reason, patients who are 13 or older also go through a screening for anxiety and depression in High Risk Asthma Clinic, and are either seen by the team psychologist, or referred to community resources. Through research, Dr. Krupp hopes to learn whether controlling asthma symptoms will help reduce anxiety and depression (or vice versa).
A key role within the program is the nurse coordinator – a position funded by donors to Riley Children’s Foundation – who works closely with families to coordinate care and conduct screenings. “Being able to have that continuity from visit to visit is really important for this type of program,” Dr. Krupp shares. “We build relationships over time, through consistency and caring. Our patients learn they can reach out to us for just about anything, and we will work to try and make it better.”
The ultimate goal is for patients to be in a position where their asthma does not need to play a factor in their life decisions, from school extracurriculars to careers. Aquoia has benefited from this first-hand. “With donations and having such a great team, it’s allowed me to get to a better place to do what I want to do,” she says.
Now 17, Aquoia recently graduated from Warren Central High School in Indianapolis, where she served as assistant editor for the school newspaper and performed in show choir. Being able to sing and dance on stage is significant progress for the teenager, who once struggled to make it through the night without gasping for air.
“I always want to dive in and do something new and more adventurous,” Aquoia says. Her next adventure: Starting nursing school at IUPUI in the fall, inspired by her own medical team.
“Being a patient at Riley has created a little family,” Aquoia says. Her Riley caregivers have attended her choir concerts and participated in walks to raise awareness about asthma. “These are relationships that will last beyond treatment,” echoes Tiffany. “We’ll have to start calling Dr. Krupp ‘Aunt Doctor Krupp.’” They both laugh, but the sentiment is sincere.
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