Community-based initiatives are helping to improve the lives of children with asthma through mobilizing the energy, commitment, and creativity of health professionals and volunteers.
The alarm bell officially rang in 1998 when the Centers for Disease Control and Prevention (CDC) reported the rates of morbidity and mortality related to asthma for 1960-1998. Asthma, a disease of chronic inflammation and acute bronchospasm of the airways, had reached epidemic proportions in the United States. The number of asthma cases in children under 5 years of age increased more than 160% between 1980 and 1994, and 74% among children ages 5 to 14 years of age.1
Asthma occurs in individuals of all social classes and racial and ethnic groups; however, asthma is a disease with significant health disparity as the report made all too clear. The greatest burden is among children from poor, urban, and minority communities. In 1993, African-Americans were three to four times more likely than whites to be hospitalized for asthma and four to six times more likely than whites to die from asthma.2
Treatment guidelines have the potential of reducing these types of disparities in patients with asthma by decreasing variation in provider and patient behaviors in managing the disease. An expert panel convened by the National Heart, Lung, and Blood Institute (NHLBI) developed the Guidelines for the Diagnosis and Management of Asthma in 1991 (revised in 1997) to provide a standard of care for asthma.
Asthma Medication
Pharmacotherapy, when properly prescribed, can prevent and control asthma symptoms. Asthma medications are generally categorized into two broad classes: rescue or quick relief medications and maintenance or long-term control medications. Rescue medications are the drugs of choice to reverse acute airflow obstruction and relieve bronchoconstriction, and belong to the family of short-acting b2 agonists, anticholinergics, or systemic steroids. Maintenance medications are agents that address the inflammation of the airways, such as inhaled cortico-steroids or other anti-inflammatory agents, long-acting bronchodilators, and leukotriene modifiers. Inhaled corticosteroids are considered by the NHLBI guidelines as the first-line therapy for mild to severe persistent asthma in children and adults.3
Short-acting b2-agonists have been shown to be safe and effective medicines to treat or prevent bronchospasm in children. When it was introduced in 1982, the b-agonist albuterol provided improved b2-stimulation selectivity with the least side effects of any other existing bronchodilator at the time; however, earlier this year, the Food and Drug Administration (FDA) approved a purified form of albuterol, levalbuterol, for use by children as young as 6 years of age. Studies have shown its ability to produce longer-acting bronchodilation, with half the dose of albuterol, and with fewer side effects.4-6
Compliance with the NHLBI guidelines in the diagnosis and management of asthma should result in reduced frequency and severity of asthma exacerbations, associated emergency department (ED) visits, and hospitalizations.7 However, despite published guidelines, both morbidity and mortality associated with asthma are on the rise. Public health officials seeking a solution to the asthma epidemic quickly perceived this paradox and began to focus on the complex contributing factors associated with the escalating incidence and severity of asthma.
Scientific evidence points to a number of risk factors for asthma, including a genetic predisposition for the condition as well as exposures to environmental allergens and irritants. In addition, there are a number of significant public health issues that surround the epidemic of pediatric asthma, including access to quality, affordable health care, continuity of care, culturally competent care, and variations in the management of patients with asthma.8,9
Because asthma is not a disease with a single etiology, there is no single magic bullet for its cure. Therefore, the focus of effective management should be on control and prevention. Inner-city communities are responding to this challenge by forming broad-based coalitions, which mobilize local resources to create asthma-safe environments for children whether at home, in the classroom, or on the playground.
Many of the community-based coalitions that are emerging across America are composed of two key components. The first is a mechanism by which to identify patients with asthma or are at risk of developing asthma. EDs of local hospitals are a good source by which to identify these patients. The second is an educational component that promotes asthma awareness and self-management. Many coalitions have found that RTs, in addition to nurses and social workers, are particularly effective at providing asthma education. There are a growing number of RTs responding to the need for community-based asthma education, and are combining their clinical knowledge with behavior modification techniques to teach patients and their families improved self-management. This article reviews some of the dynamic strategies being deployed by community-based coalitions across the country to respond to the asthma epidemic.
Elements of Community-Based Initiatives
The 106th Congress heeded the CDC’s wake-up call and passed legislation that included asthma-related provisions to the Children’s Health Act of 2000. Phase 1 of the National Institute of Allergy and Infectious Diseases (NIAID) First National Cooperative Inner City Asthma Study in 1991 identified a number of factors associated with the severity of asthma in inner-city children, including high levels of indoor allergens.
Phase 2 of the study, which began in February 1996, focused on implementing a comprehensive program to improve the surveillance and tracking of asthma in the United States, promote better asthma self-management skills, and eliminate or decrease exposure to environmental factors. One component called for “asthma care counselors” to teach asthma self-management skills to patients and their caregivers. This highly successful program reduced by approximately 30% major asthma symptoms, hospitalizations, and ED visits. In February 2001, the CDC provided $2.9 million to enable community-based health organizations throughout the United States to implement the elements of the NIAID model. These included gathering information about the disease, providing skills to improve asthma self-management, and assessing and removing environmental triggers.
Concurrent to the NIAID study, nonprofit health care organizations began to mobilize their efforts along similar themes. In cities across the nation, funding was made available, such as the American Lung Association, local health care departments, and The Robert Wood Johnson Foundation, to create partnerships among the community-based resources required to address the problem. Communities across the nation began to create a safety net of asthma care that included health care clinics, local hospitals, managed care companies, school-based nurses, RTs, social workers, and advocates for quality health care and improved air quality.
Today, numerous community-based coalitions have emerged as the front line in the management and prevention of childhood asthma. The NIHLB alone works directly with more than 50 of these community-based coalitions. And in 2001, the CDC funded 30 asthma partnership projects under its National Asthma Control Program to help generate local asthma control programs.
Tracking and Intervention
The first step toward a solution for pediatric asthma in this country is to identify the children at greatest risk for developing it; however, 12 of the 20 states where outdoor air pollutants known to exacerbate asthma are the highest do not track asthma at the state or community level.10
From an epidemiological standpoint, tracking and surveillance data provide the ability to measure prevalence, any disparity in the rates of morbidity and mortality, and the effectiveness of interventions. A study released in May 2002 by the UCLA Center for Health Policy Research, The California Endowment, and the California Department of Health Services identified for the first time information on how asthma differs from region to region within the state. Among its key findings is that 18.2% of children in California who experience daily or weekly symptoms of asthma are not currently taking any medications to control the disease.11
Many community coalitions are using asthma ED encounters as entry points for patients into a system of asthma education and coordinated care. For example, the Philadelphia Allies Against Asthma Coalition’s RTs provide asthma education on-site in the ED. In other coalitions, case managers are assigned to help link the patient and their family to a primary care physician and a school-based nurse. The case manager assists providers by sharing clinical information and coordinating nonclinical services essential to patient care, such as transportation to a doctor’s appointments or filling out health insurance forms.
Surveillance and tracking data can also help identify physicians who have large caseloads of children with asthma. Special asthma case managers can then work with these doctors to provide additional services, such as environmental assessments of asthma triggers in their homes. The Long Beach Alliance for Children with Asthma plans to use the services of an asthma resource center to reach out to area physicians whose practices have a large proportion of pediatric asthma cases. The center would offer professional educational resources to keep the physician and medical assistants up-to-date on the latest advances in asthma treatment, as well as provide asthma education services for the patients and their families.
Education
The importance of asthma education for patients cannot be understated. Research shows that patient knowledge is a useful prerequisite to effective self-management strategies.12-14 Helping patients understand the clinical dynamics and preventive options of their disease encourages compliance with treatment guidelines that promote control of their symptoms. Knowledge is particularly important to the management of asthma. A patient’s quality of life, health status, and psychological health can be optimized by understanding how to prevent and control asthma symptoms.
Asthma education should be directed to both the patient and the parent. Research has shown that parental attitudes are important and can have a negative impact on the management of their child’s asthma. One study of inner-city parents showed a low level of understanding by some parents concerning the appropriate use of medication in the absence of symptoms. Some parents preferred nonpharmacologic therapies like calming techniques, breathing exercises, and biofeedback to drugs because they associated pharmacologic therapies with addiction. And, while some parents were knowledgeable about environmental triggers, they expressed a feeling of loss of control over their home environment.15
RTs have emerged as particularly adept as asthma educators. Community coalitions have been quick to recognize the ability of RTs to communicate effectively to young children with asthma and their parents. For example, The King County (Washington) Asthma Forum uses RTs to provide Asthma Care Training in local sites, such as community centers. In this program, parents and children receive separate instruction with materials targeted specifically for each respective age group. This program has been shown to increase the child’s decision-making skills and self-management behaviors.
The ability of RTs to teach asthma management to children and their parents also plays a significant role in the New Jersey Pediatric Asthma Coalition. At the Coalition’s summer camp—Superkids—RTs administer medication along with asthma education to inner-city children. And, at a recent satellite broadcast event for RTs, sponsored by the coalition, trainers at each of the downlinked sites across the state provided asthma education training to the audience. The successful effort enabled the coalition to expand its impact by recruiting more than 50 RT volunteers, resulting in a trained volunteer in each of the state’s counties.
Knowledge of the role of indoor triggers is especially important in self-managing asthma patients. Many coalitions have made environmental assessments of asthma triggers in the home a cornerstone of their strategy. The Contra Costa Health Department, in partnership with the county health system and the American Lung Association, dispatches teams of RTs and case managers to homes where they teach the appropriate use of medications, as well as to how to reduce or remove such irritants and allergens as tobacco smoke, nitrogen oxides, dust mites, cockroaches, pet dander, and mold.
The philosophy behind community-based coalitions is to provide support wherever the young child with asthma spends lengthy intervals of time. Schools and day care centers play a critical role in providing asthma safe environments and in administering appropriate proactive treatments that enable children to enjoy normal physical activity. Many coalitions have developed strong partnerships with school districts and employ strategies utilizing school-based nurses to identify, educate, and treat asthma in at-risk children.
Conclusion
The gulf between the epidemic of pediatric asthma and its solution can be daunting. The prevalence of children with asthma in our inner cities continues to rise. Morbidity and mortality associated with asthma are also escalating despite standardized guidelines for its diagnosis and management. Socioeconomic and cultural factors often separate patients from the system of care dedicated to help improve their health. Community-based initiatives, however, provide a beacon of hope. Growing in number, these coalitions have sprung up from coast to coast, mobilizing the energy, commitment, and creativity of hundreds of health professionals and volunteers to improve the lives of children with asthma.
Beverly M. Gaines, MD, is vice president of the National Medical Association, Louisville, Ky.
References
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