Jo Ward's twin boys have been to the ER for breathing problems about as many times as the dozen years they've been alive. Both have asthma and bronchopulmonary dysplasia, a form of chronic airway damage that can occur in children born premature, as the twins were.
But each time Ward took them in for treatment during an acute bout of difficulty breathing, the staff told her to schedule a follow-up visit for the children with their doctor only if they didn't get better, though medical guidelines recommend seeing a doctor again no matter what.
"They asked questions, they did the exams, but they really didn't give you a lot of information to help you at home," Ward says. If they had, she adds, she doesn't think she'd have needed to take them in for emergency care so often.
A new study suggests she's right.
Current guidelines for asthma recommend that patients who visit the ER for an asthma-related problem should see a doctor for a follow-up appointment within a month, regardless of how well they have recovered, according to Naomi S. Bardach, MD, a professor of pediatrics and health policy at the University of California, San Francisco, who led the new study.
Her research found that children who have a follow-up visit within 2 weeks of going to the ER are less likely to come back again the next year. Yet the study, published April 1 in the journal Academic Pediatrics, also found that only about 1 in 5 kids had a follow-up visit within that 2-week window.
"The ER visit is probably a sign that they need some additional attention for their asthma," Bardach says. "We know we can prevent ER visits if they get the right kind of medication, or if they figure out how to avoid the things that are going to cause an asthma exacerbation or flare."
For the study, Bardach and her colleagues analyzed data from California, Vermont, and Massachusetts for all asthma-related ER visits for patients aged 3-21 years between 2013 and 2016.
Out of the 90,267 such visits they identified, 23% of patients had a follow-up within 2 weeks, more often by patients who were younger, had commercial insurance, had evidence of prior asthma, or had complex chronic conditions.
Whereas 5.7% of patients who had follow-up visits returned to the ER within 60 days, the number was 6.4% for those who didn't — a 12% difference. The gap was larger a year out, with 25% of those with follow-ups returning to the ER compared to 28.3% of those without follow-ups, according to the researchers.
Overall, Bardach's group estimates that for every 30 children who have follow-up visits with a doctor, one would avoid a return trip to the ER for asthma within a year.
It may seem like a small difference, but given the sheer number of asthma-related trips to the ER each year — 164,145 for kids age 1-17 years in the U.S. in 2016 — that translates into big numbers of kids not going back to the hospital. Follow-up care could help parents and kids avoid approximately 72,000 such trips in a year, saving the healthcare system at least $8.6 million.
Had Ward's boys been among the 1 in 5 to receive follow-up care earlier in their lives, she might have saved a significant amount of time, money, anxiety, and heartache.
When the twins were 9 years old, she took them to a new pediatric pulmonologist. That changed everything. In that first visit, "they gave me way more information than I ever had in the first 9 years," she says.
The doctor told Ward to keep steroids on hand, gave her a prescription for extra doses of the powerful medication, and explained that they needed to be used within 24 hours of the first sign of a breathing problem.
"She said if you give them the steroids right away, it keeps them out of the emergency room, and that's actually worked," Ward says. "She made sure we had care plans every visit and asked me each time if I still had it or we needed to rewrite it. They gave me signs to look for, for when to go to hospital visits. I think that when you go to the doctor, they should be telling you stuff like that."
Bardach says visits with a primary care doctor or asthma specialist offer families a chance to get information to keep the condition from becoming critical. They can learn about how to avoid things that trigger asthma and get maintenance medication, which “keeps the lungs calm and less likely to have a big asthma reaction," she says.
That was the case for Amy Davenport, of Chapel Hill, NC, whose 6-year-old son has been to the ER twice for his asthma.
The first time, when he was 3, he was having trouble breathing with a respiratory tract infection and got nebulizer treatment — although he received it in the emergency room since no beds were available in the intensive care unit.
The staff did tell Davenport to follow up with her primary care provider, but her son's pediatrician was reluctant to diagnose him with asthma at such a young age and didn't prescribe any maintenance medications.
A few months later, Davenport and her son found themselves back in the hospital, and an ICU bed was open this time. The critical care staff referred Davenport to a pediatric pulmonary specialist, and they haven't been back to the hospital since.
Davenport says she believes if they'd received a maintenance medication after the first visit, it likely would have prevented the second one.
"I've definitely seen now that, after the second admission, we got an asthma action plan and it said exactly what to do," she says. "I felt like we had really good follow-up. We had that action plan on our refrigerator for a long time, and it helped us as parents with three small children to manage."
Of course, follow-up care takes time — time away from work and school that not all families can spare, the researchers acknowledged. Telehealth may be an option, they added, especially after its use expanded during the COVID-19 pandemic.
"We know that health systems have a hard time being flexible enough to actually have a kid be able to make an appointment within a short period of time, and we also know it's hard for families sometimes to go back into a clinical setting within a certain period of time," Bardach says. And if a kid seems to be doing better, the follow-up appointment may not seem urgent.
When the researchers adjusted their calculations for socioeconomic status, the results didn't change much. But the study did find that patients with private insurance were about twice as likely to have follow-up visits as those on Medicaid (44% vs 22%). And "the content and conduct" of the follow-up visit makes a difference, too, they reported.
Ward, whose boys are insured through Medicaid, recalled several visits to the ER where she had to push the staff to get the care her children needed.
In one case, when one of her boys was a year old and struggling to breathe, the doctor handed her a prescription and recommended she fill it at a neighborhood drugstore that would be cheaper than the hospital's pharmacy. Then a nurse came in to begin the discharge process.
"I said no, 'We're not ready yet. Look at him,'" Ward says. The nurse took a pulse oximeter reading that showed the boy's oxygen levels were at 84%, dangerously low. "If I wasn't so knowledgeable and paid attention when they were born, since they were preemies, if it would have been somebody else, they probably would've went home and he'd have died."
With the pediatric pulmonologist the boys have now, Ward says she feels more capable of managing their asthma and knowing how to reduce the likelihood that they'll need to go to the ER.