For 17-year-old Marquis Lewis of Boston's Mattapan neighborhood, it begins with a hacking, relentless cough. His heart pounds, his neck strains and his chest sinks in—all signals of his lungs' desperate fight to capture even the smallest bit of air. "It gets real tight," Marquis says, pointing to his chest. "It's like I'm fighting just to breathe."
Marquis, a Children's Hospital Boston patient, is describing an acute asthma attack—a scenario that's all too familiar to the approximately seven million U.S. children who are diagnosed with the respiratory condition. The most common chronic childhood disease in the nation, asthma causes a narrowing and swelling of the airways in the lungs. With proper management and the correct use of medication, children with asthma can usually live normal, active lives. But it has no cure, and when it's not kept under control, it can be debilitating and even fatal.
Marquis was 18 months old when he experienced his first attack. It was a bout so severe that he was hospitalized in Children's intensive care unit (ICU) for two days. Mere weeks later, he was again rushed to Children's. For the Lewis family, these early attacks were only the first chapter in what would become a long and grueling cycle of sleepless nights, absent school days, missed work days and financial and emotional strain.
The family soon discovered that Marquis—like many chronic asthmatics—was suffering from severe allergies. Coming into close contact with dairy, nuts, eggs, fish, bananas, soy, latex and pollen would cause a rash around his mouth and would trigger his asthma attacks. Each year, his asthma progressively got worse. On cold winter days, his grandmother would need to pick him up from the nearby bus stop, since Marquis was unable to walk home without coughing and wheezing intensely, setting off his asthma attacks.
The situation reached a critical point in the ninth grade when Marquis missed 72 days of school in a single year, causing him to have to redo his freshman year. He was often teased for being hospitalized so often. "I would get down on myself because I was falling behind in school and I would hide the fact that I was having an asthma attack so I wouldn't miss school," he says.
Asthma, it appeared, was taking control of Marquis's life, leaving the Lewis family in a desperate search for help. But that all began to change when, at age 16, Marquis was introduced to Children's Community Asthma Initiative (CAI), an innovative program led by a group of health care providers, asthma educators and administrators concerned about the devastating impact of asthma on its patients.
"Asthma is the most common cause of admission at Children's, and 70 percent of these admissions are from children who live within a three-mile radius of the hospital," says Shari Nethersole, MD, Children's medical director for community health. "Asthma shouldn't be so difficult on children's lives. We wanted to learn why these children were being rushed to the ED, and what we could do about it."
CAI studied patients being admitted to the hospital and found that while they were being prescribed the right medications, many children weren't taking them correctly, if at all. But why? According to their findings, it all came down to communication. Patients and families didn't fully understand how to care for asthma. After all, it's a tricky disease to manage, requiring various tools and medications. It can be triggered at anytime by a wide range of things, including changes in weather, pet dander, mold, strong chemical odors, dust and even change of mood. And while asthma affects children of all walks of life, it hits low-income Latino and black families particularly hard. Due to a wide range of socioeconomic challenges, including poor housing, higher pollution levels in inner-city neighborhoods and the challenge of paying for asthma medications, admissions are five times higher for black and Latino children than for white children.
With such a complex condition, doctors and nurses at Children's were struggling to make much headway during brief conversations with their patients. "Can you really educate someone about asthma in the course of a 15 minute outpatient visit? The short answer is no," says Nethersole. "We knew we needed to get into the homes and into the fabric of the community."
To reach patients more directly, CAI developed a strategy to bring asthma education and management into families' homes. Nurse case managers who specialize in asthma began to make home visits to local families struggling with asthma. This approach gave them a birds-eye-view of potential household triggers, while improving communication between patients and their caregivers. CAI staff often spend more than an hour during an initial home visit—ample time to properly teach both children and parents how to take control of their asthma. "We establish trust with our families from the very beginning," explains Massiel Ortiz, RN, CAI nurse manager who serves the Lewis family. "Trust is everything. We are never there to judge, but to help."
One of the main reasons for Marquis's asthma attacks became apparent during Ortiz's first home visit to the Lewis household. She noticed that Marquis was not properly using his Albuterol inhaler, which meant that the asthma medication was getting to the back of his mouth, but not down into his lungs where it would be most effective. "I said, 'Marquis, your mouth is asthma-free, but what about your lungs?' "Ortiz says. "I also noticed that he had congestion, yet he was not taking his Flonase medicine, which helps bring down inflammation at the first sign of a cold. By not taking this medicine, phlegm was traveling down into his lungs and triggering his asthma."
Working closely with Ortiz, the Lewis family pored over asthma educational materials to learn more about the basics of asthma, its cause, symptoms, triggers and medications. Ortiz showed the family how to use natural household cleaning products like white vinegar and baking soda, rather than strong household cleaners, which are common asthma triggers. She also gave the family special bed covers to reduce dust mites, which are a common allergen, peak flow meters to measure how well air moves out of Marquis's lungs, portable nebulizers to dispense asthma medication in the form of a mist into his lungs and HEPA filter vacuum cleaners to help remove dust from their home.
Together, they developed an asthma action plan, using CAI’s color-coded instructions and easy-to-grasp traffic signal theme. "The patient is in the Green Zone when they are doing well and not experiencing symptoms. To maintain this, a daily control medication is frequently prescribed," says Amy Burack, RN, MA, AE-C, community asthma programs manager. "The Yellow Zone is when they begin to display even the most mild symptoms for which additional medicine is recommended. The Red Zone is anytime the patient has extreme symptoms and is struggling to breathe, requiring immediate medical attention."
In addition to home visits, CAI conducts trainings and educational workshops in local schools, day care centers and YMCAs. So far, CAI's approach is reaping impressive results. The number of asthma-related emergency room visits at Children's was reduced by 62 percent and hospital admissions by 82 percent since the program's inception. In addition, lost school days were reduced by 40 percent and missed work days for parents and caregivers were reduced by 47 percent. CAI also recently won the Environmental Protection Agency's 2010 National Environmental Leadership Award in Asthma Management.
The impact on Marquis has been equally remarkable. One year after participating in CAI, his emergency room visits have been cut by at least half, he's missing fewer school days and his grades have improved. He even played starting point guard in three city basketball leagues last summer, and is planning on attending Northeastern University on a full scholarship. "I feel like I have control of my asthma rather than it having control of my life," he says. "And I can do the things I like to do with more confidence."