Because she grew up with a twin sister with asthma, Joanna Quiles was something of an unofficial expert on the condition long before her own son, A.J., was diagnosed with it.

But despite Quiles' knowledge, ensuring that her son's asthma is under control remains a source of frustration.

She's been scared while A.J. was at school, worried about the level of expertise the school nurse has in what could be a life-threatening condition. Once, the school sent A.J. – who is now in third grade – to the hospital in an ambulance for something Quiles said could have been handled routinely.

She ends up serving as the intermediary between her son's doctor, school nurse and their pharmacy on matters as simple as medication refills. Scheduling appointments at a specialty clinic can be a challenge. And the steroid A.J. takes to control his asthma has led to weight gain. He sometimes gets picked on about it.

"It's just a struggle," Quiles said.

Asthma strikes Connecticut residents at higher rates than residents of the nation overall, affecting 11.3 percent of children and 9.2 percent of adults in the state. It led to nearly 1,000 hospitalizations among children and more than 3,100 among adults last fiscal year. And, although experts don't know why, it's becoming more common.

Can Connecticut make headway in changing the course of the disease, making it something that patients can routinely control in the community rather than something that often brings people to the hospital in crisis?

"People are surprised to hear that people can die of something that can be controlled and managed."

Quiles is among those trying. She's part of a Hartford effort to design a new model, dubbed an "asthma neighborhood," for managing the condition. It is one of multiple efforts in the state focused not on new treatments but better coordinating the systems patients encounter – including schools, pharmacies, home visiting programs, doctors' offices and hospitals – and bridging gaps that can lead to emergency room visits or hospitalizations.

It's a concept that some in health care say can, if done well, become a model for addressing other chronic diseases that are more heavily influenced by what happens in a patient's daily life than treatment in the medical system. It comes at a time when health care providers are being pushed to take on more responsibility for keeping patients well, rather than simply treating acute illnesses when they occur.

"We have to get away from 'the doctor is the one who's going to solve everything all by themselves in their office,' because we can't," said Dr. Sandra Carbonari, a Waterbury pediatrician and immediate past president of the Connecticut Chapter of the American Academy of Pediatrics. "We don't know what's going on in the school. We don't know what's going on at home."

The Connecticut Hospital Association has also launched an initiative focused largely on trying to ensure that asthma can be managed through primary care and community support.

"Asthma is still very much a public health issue and concern," said Renee Coleman-Mitchell, chief of the community, family and health equity section at the Connecticut Department of Public Health, or DPH. "People are surprised to hear that people can die of something that can be controlled and managed."

Asthma was responsible for 50 deaths, 5,146 hospitalizations and 24,239 emergency room visits in 2009 – as well as close to 60,000 missed days of school or day care, according to DPH.

And the condition disproportionately affects certain groups. Residents of Connecticut's five largest cities – 17.5 percent of the state population – accounted for 40 percent of asthma hospitalizations in 2009, according to DPH. According to the Connecticut Hospital Association, Latinos in Connecticut were 4.5 times more likely than whites to visit the emergency room because of asthma in 2013. Among blacks, the rate was more than five times higher.

Those statistics don't measure the frustration of parents like Quiles, but recent focus groups in New Haven, Bridgeport and Hartford found that many of her concerns were echoed by others who deal with asthma.

Parents described anxiety about sending their children to school because of triggers – like dust or the lack of air conditioning – and concerns about the school staff's ability to manage the condition.

"Parents reported feeling overwhelmed by managing their children's asthma," said a report on the focus groups, conducted for the hospital association by the Hispanic Health Council. "Adults with asthma expressed feelings of helplessness and embarrassment related to the impact asthma had on them."

At hospitals, simplifying instructions

Simplifying instructions patients get and trying to better link different types of providers are also key parts of the hospital association's asthma initiative.

The Connecticut Asthma Initiative focuses on three interventions:

Ensuring that patients set to leave the emergency room are taught how to use their inhaler and then "teach back" the method to show they understand; Giving patients leaving the hospital a discharge plan that includes an asthma action plan they can show all their health care providers; Ensuring that patients leaving the hospital have a follow-up appointment with a primary care provider and, if necessary, a connection to other support services, like case management.

There's also a less tangible goal: Change the way people with asthma think about the condition, from one in which patients are powerless and likely to end up in the emergency room, to one in which they have control. Since many patients are kids, the hospital association developed graphics depicting a cartoon superhero fighting back against asthma, and a video using the superhero that can be shown in doctors' offices to teach basic management information.

Medication can be a particular challenge for patients, hospital officials and respiratory therapists said during presentations last month at the hospital association. Often, patients don't know how to use their medication or don't understand why it was prescribed. And some cost so much – hundreds of dollars – patients don't use them.

Experts at Lawrence + Memorial Hospital in New London worked with school nurses and developed sample notes the nurses can give to parents saying their child was in the office that day, a boilerplate letter they can send to primary care providers to help them communicate about a child's asthma, and information they can use to talk to teachers about signs to watch in children with asthma and ways to reduce asthma triggers in the classroom.

Under the way care is currently paid for, keeping patients out of the hospital is a financial hit for hospitals, noted Madeleine Biondolillo, the hospital association's vice president for population management.

But the payment model for care is changing, and is expected to increasingly tie payment to both care quality and cost-effectiveness, and to emphasize keeping patients well, rather than simply treating their acute illnesses. That's expected to encourage hospitals to work with other types of providers – including nursing homes, home care providers and community physicians – to ensure patients' conditions are under control.

Asthma made sense as a condition for hospitals to focus on, Biondolillo said, because it can be cared for in the community, not in hospitals.

"It's really quite horrifying to people that Connecticut residents are dying" from asthma, she said.

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