Specialty care remains out of reach for many children with uncontrolled asthma

Only about one in six historically marginalized children with uncontrolled asthma in a Rochester, New York-based study saw an asthma specialist in the past year, despite clinical guidance recommending specialty evaluation and management of the condition. 

The study, published in the Journal of Asthma, analyzed data from a school-based asthma program that provides telemedicine access to specialist-supported care for children living in the city of Rochester (ages 4-12 years) with moderate to severe asthma. Researchers found that only 37% of children had ever been seen by a specialist such as a pulmonologist or allergist, and just 16% had received specialist care in the prior year. All children in the study met criteria for uncontrolled asthma. 

“Our population includes kids who are disproportionately affected by barriers to care,” said Emily Aman, MPH, co-author and senior coordinator for the school-based asthma program. “We know specialist care is recommended for children with uncontrolled asthma, but the numbers were low, especially considering that every child in the study met criteria for seeing a specialist.”  

A Referral Bottleneck 

The study also highlighted what may be one of the most actionable barriers: primary care provider (PCP) referrals. 

While a PCP referral was associated with a greater likelihood that a child had received specialist care, only 23% of children in the study had been referred to a specialist by their primary care provider.  

Time pressures, competing priorities, and the complexity of modern asthma guidance may all contribute, along with communication gaps that can leave caregivers uncertain about what to ask for during a brief office visit. 

“Many caregivers can feel rushed when they’re in their doctor’s visits,” said Rachel White, MS, co-author and research specialist who works with families in the asthma programs. “Some families may not be aware that a specialist could be helpful for their child.” 

Children who did see a specialist in the prior year were more likely to be: 

• Younger 

• Hispanic 

• Living in a smoke-free home 

• Living with a married caregiver 

• In households with income ≥ $35,000 

Among children who had not been seen by a specialist, caregivers reported common factors that can worsen asthma control: 

• 38% reported allergic rhinitis (comorbid condition causing inflammation and allergy symptoms) 

• 42% reported smoke exposure in the home 

These findings align with broader evidence that social determinants of health, such as transportation challenges, work schedules, and limited resources needed to navigate complex health systems can shape who receives recommended specialty care. Caregivers often want more help but aren’t connected to it. In fact, 81% of caregivers in the study believed asthma specialist care would be helpful for their child. 

White emphasized that the gap is not about casting blame on families or providers, but addressing a system that is easier to navigate for some than others. 

“We often move quickly and assume shared understanding,” she said. “But families may not know when specialty care is an option, or that it’s being recommended at all. Closing that gap requires clearer, more proactive communication.”

Telemedicine as Potential Solution 

The analysis draws on baseline caregiver-reported data from 325 children ages 4–12 enrolled in the Telemedicine Enhanced Asthma Management – Uniting Providers (TEAM-UP) randomized controlled trial in Rochester, NY between 2018 and 2023. Researchers say telemedicine and school partnerships may help reduce common barriers, particularly transportation challenges and missed work time, while strengthening connections between school nurses, primary care teams, and specialist services. 

But the researchers emphasized that implementation is complex, with many moving pieces, including training staff and developing workflows, as well as persistent challenges like chronic school absenteeism. 

“In theory, it makes sense,” Aman said. “In practice, it’s difficult to get all the pieces together. But there’s real potential.”