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?
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.”
A ‘neighborhood’ approach
Lots of interventions have been developed that seemed to make a difference with asthma, said Dr. Michelle Cloutier, director of the asthma center at Connecticut Children’s Medical Center. But, she said, often they had little effect on long-term outcomes. Many relied on funding sources that dried up.
The asthma neighborhood project, which is funded by a planning grant from the National Heart, Lung, and Blood Institute of the National Institutes of Health, is intended to develop a program that can be replicated and sustained, and to develop a clinical trial to test whether it reduces hospitalizations, emergency room visits and school absences. The planning team involves a wide range of community groups, parents like Quiles, public agencies and practitioners.
The term “neighborhood” refers to the many factors that influence a child’s health – including the family, medical community, city, landlords and schools. The clinical trial will focus on bringing together four interventions that already exist but aren’t coordinated:
- Easy Breathing, a program that teaches primary care clinicians to diagnose and treat asthma;
- A version of Easy Breathing for school nurses that Cloutier said has helped to cut absenteeism in Hartford schools;
- Home visitation programs in which a community health worker goes to a family’s home to help address things that might exacerbate asthma, like clutter;
- Specialty asthma clinics with intensive case management for children with severe cases.
The idea is to develop a system that, for example, lets school nurses and primary care clinicians communicate regularly, or allows pharmacists to get in touch with a child’s school nurse.
Those types of systems already exist in other contexts – Cloutier pointed to automated notifications people get from their pharmacies when a prescription is ready for pick up.
Perhaps a pharmacy could have a system to call a doctor if a patient hasn’t picked up a prescription in more than 90 days, allowing the physician to follow up and figure out why, she said.
Progress through simplicity
Cloutier has experience developing a program that gets results. She created Easy Breathing, the asthma management program that pediatricians say dramatically improved care.
It grew out of Cloutier’s experiences working with families as part of a peer counseling program nearly two decades ago. While she was talking to a mother about how to administer her child’s asthma medication, the woman told Cloutier, “Even when I use the medicine, my child’s not well.”
After asking for details, Cloutier realized the problem was that the child had been prescribed the wrong medication.
“So then I began to think about, ‘Maybe it’s not a matter of education for families, maybe the place to start is getting them on the right therapy,’” Cloutier said.
She talked to primary care doctors, who told her they needed help with asthma.
The program Cloutier developed, based on their input, focused on diagnosing asthma and getting a child on the right therapy, using eight questions. It included a treatment plan that had been tested with families, to ensure they would understand it.
Easy Breathing began in Hartford and has since expanded statewide and to seven other states. (In Connecticut, the program has been funded by money the state receives from a settlement with tobacco companies, but the budget Gov. Dannel P. Malloy proposed last week calls for discontinuing Easy Breathing’s funding and using the money to pay for other state operations.)
Studies have found the program has had significant effects. One study of Hartford children in Easy Breathing found they were 35 percent less likely to be hospitalized, experienced a 27 percent drop in asthma emergency room visits and a 19 percent drop in outpatient visits. Among providers in the program, the rate of following national treatment guidelines rose from 38 percent to 96 percent.
“The key was the simplicity of it,” Cloutier said.
And as pediatricians became more comfortable with the basics of asthma, Cloutier said, many came back to ask her for more advanced tools to manage the disease.
Dr. Robert Zavoski, a pediatrician who serves as the medical director for Connecticut’s Medicaid program, said Easy Breathing is unique among disease management programs, most of which, he said, offer canned strategies, reduce people to their diseases and end up unused.
“What Easy Breathing did was it made it harder for providers not to provide good care,” he said. “It made it so much easier to do the right thing and provide the right care.”
It has up-to-date science, and has been repeatedly refined, he said. It’s simple, clear and provides written instructions for patients, things Zavoski said are key – and still often not used in health care.
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.
At Day Kimball Hospital in Putnam, many patients were leaving the hospital and not filling prescriptions, respiratory therapist AnnMarie DeMerchant said. So patients there now receive a free inhaler and spacer – a device that helps the medication reach the lungs – when they’re discharged. And no asthma patient in the emergency room can leave until they show a respiratory therapist they know how to use their inhaler.
Other barriers, hospital officials said, include a lack of transportation or not being able to read.
Several programs now focus on giving special attention to patients who come to the emergency room.
St. Vincent’s Medical Center in Bridgeport has a nurse navigator in the emergency room who works with asthma patients to schedule appointments with a primary care provider. She can coordinate transportation to appointments and, if a patient needs help after hours or on weekends, arrange for them to be seen at an urgent care facility affiliated with the hospital.
And the hospital’s family health center, which provides primary care for poor patients, created a clinic for asthma patients, giving them access to a social worker who can help them clean up their homes and get help with medication costs.
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.