Inner City Asthma
Implemented in El Rio Santa Cruz Community Health Center, Tucson, Arizona by MAS Consultants Inc., P.O. Box 5130 Aiken, South Carolina 29804.
This case study was prepared for CDC by Dr. LaMar Palmer of MAS Consultants. The purpose of the case study is to share the experience of one community as they attempt to address the problem of asthma. It does not represent an endorsement of this approach by CDC.
Inner City Asthma: Research Base
Epidemiologists and clinical researchers have known for some time that the burden of asthma is especially great in urban areas with high levels of poverty and large minority populations. This is evidenced by the greater frequency of severe asthma episodes that lead to hospitalization or death. Before the mid-1990s, however, only a few interventions were designed or evaluated specifically for inner-city populations. Among those interventions, the impact has varied. The most promising results were reports of the decrease in emergency department use and hospitalization among children with the most severe asthma. Many asthma interventions for children benefited only this subgroup of children. Interventions that reduce health care, although economically important, are not always associated with a corresponding reduction in asthma symptoms or severity.
In the early 1990s, the National Institute of Allergy and Infectious Diseases (NIAID) of the National Institutes of Health funded a large asthma study among urban children known as the National Cooperative Inner-City Asthma Study (NCICAS). Phase I of this multi year project was a randomized controlled trial conducted from 1992 through 1994. It involved 1528 inner-city English- or Spanish-speaking children 4-9 years of age in eight U.S. cities. The study objective was to determine factors that contribute to asthma morbidity in children in the inner cities. The asthma-related characteristics among these children as a group revealed the following:
- Children averaged 3-3.5 days of wheeze for each of four 2-week recall periods
- Eighty-three percent had no hospitalizations during a 1-year period; 3.6% had two or more
- Smoking occurred in 39% of the households
- Twenty-five percent of the children were reported to have been in a neonatal intensive care unit
- Ten percent were on a respirator at birth
- Eighteen percent had low birth weight (less than 5.5 pounds)
- Fifty eight percent had a family history of asthma
- Seventeen percent used no asthma medications
- Forty-two percent of the children taking any asthma medication had only relief medications/beta-agonists
- Seventy-seven percent of children tested had at least one positive skin test to asthma-associated antigens; 47% had three or more
- Fifty-three percent had difficulty obtaining follow-up asthma care
Additional information about this research activity was published by M. Kattan, H. Mitchell, P. Eggleston, et al. in "Characteristics of Inner-City Children with Asthma: The National Cooperative Inner-City Asthma Study" in 1997 in volume 24 of the journal, Pediatric Pulmonology.
This information indicated areas that potentially contribute to asthma morbidity in the inner-city population, namely environmental factors, lack of access to care, and adherence to treatment. Researchers used this accumulated understanding gained from the phase I study results to formulate the NCICAS phase II intervention. Phase II, carried out in 1995-1996, was designed to reduce asthma symptom days in low-income inner-city children ages 5-11 with asthma. The aim was to improve the children’s quality of life and decrease unscheduled medical-care visits and hospitalizations. The Inner-city Asthma Intervention, launched in 2001, replicated the NCICAS study.
The following sections discuss the goals of the phase II NCICAS intervention, the educational content of the intervention, the evaluation design, important characteristics of the study population, and the results of the intervention.
Goals of the Intervention Research
The NCICAS phase II research evaluated a family-focused asthma intervention for low-income inner-city children with moderate to severe asthma. The research focused on both problem solving and asthma education so that participants would have an improved understanding of their children’s disease and the skills to properly use their medications, avoid triggers, and communicate with their physician about their medical needs. Phase I results showed that these children averaged 3-3.5 days of wheeze in a 2-week period, amounting over a year to 78-91 asthma-wheeze days. The specific goal was to reduce the children’s asthma symptom days (wheeze, loss of sleep, and loss of play).
Overview of the Intervention
Because of the nature and diversity of problems that influence asthma management in the inner city, the principal investigators selected master’s-level social workers, called asthma counselors (AC), to shoulder the front-line responsibilities. Social workers are familiar with the problems of inner-city families and possess the counseling, assessment, and intervention skills needed to respond to and make appropriate referrals for the many non-asthma related issues that arise during the intervention.
An AC was employed at each of the eight study locations to manage the intervention for a group of approximately 80 children with asthma and their families. They received training over a 3-month period in three 2.5-day training sessions, and they attended local asthma clinics for at least 2 weeks before taking on the AC assignment. The AC was provided a detailed guide for carrying out the protocols defined in the study. The components of the intervention are:
- Asthma Risk Assessment Tool: An initial assessment of each child’s asthma, behaviors, and home conditions
- Formal group education sessions with parents and children
- Informal individual family education sessions
- Informal assistance, support, and referrals for the families
The Asthma Risk Assessment Tool
The Asthma Risk Assessment Tool (ARAT) questionnaire was the first task completed in the intervention. The parents answered a battery of questions related to their children’s asthma history, symptoms and triggers, medications and adherence, environmental conditions at home, and psychological well being. The results of the questionnaire were used to identify each child’s asthma risks and to individualize the intervention for each child and family (tailor the asthma education and guide intervention activities). For example, if the ARAT showed that smoking occurred in the home, then education on smoking cessation or control around the child would take place. If the ARAT showed that a child did not take his/her asthma medicines regularly, then medication adherence would be addressed during the intervention. If the ARAT indicated a family did not have a primary-care physician, the AC would assist that family in acquiring one.
Educational Content of the Intervention
The education intervention included both adult and children’s group sessions conducted by the AC and at least one individual family session tailored to the family’s needs and the child’s asthma risk profile. The children’s caretakers identified at recruitment were invited to attend two adult group asthma education sessions and one individual meeting with their AC during the first 2 months after the baseline assessments. (The investigators used the term "caretakers" rather than parents because a large number of children live with persons other than a mother or father. Caretakers include grandparents, aunts and uncles, and older siblings in addition to the parents.) The asthma messages were delivered in the following formats:
Adult group sessions
The ACs conducted the adult group education course in two sessions that all children’s caretakers were expected to attend. The topics included:
- Asthma triggers
- Environmental controls
- Asthma physiology
- Strategies for problem solving
- Communicating with the child’s physician
Children’s group sessions
During the 2 months after completion of the adult sessions, the ACs conducted two children’s group sessions to ensure consistency from group to group. The topics paralleled those completed earlier by their caretakers but at the appropriate age level of instruction. If a parent or a child missed a group session, the AC covered the topics later during individual sessions.
Education sessions for caretakers and children focused on building skills and confidence rather than on just divulging information. A proven learning model used to affect behavior change on the part of participants was applied repeatedly by the ACs as they taught proper use of the inhaler and the peak flow meter, recognition of asthma clues, avoidance of asthma triggers, and actions to reduce allergens in the home. This learning model encompassed the following points:
- Know what to do and how to do it
- Believe it can be done
- Try it once
- Get reinforcement
- Continue to do it
During education sessions, this learning model was reinforced by rehearsing (demonstration by the AC and the participant), repeating key points three or more times during a session, and reinforcing the expectation at subsequent sessions.
Participants learned from their peers. In-class discussions among parents on asthma topics, especially asthma symptoms, trigger avoidance, and adherence to medicines reinforced important information from the AC. Also, participants realized they were not alone in dealing with asthma. Class members with more experience dealing with children with asthma helped those more recently confronted with the challenges of asthma to understand that they could manage their children’s disease.
Individual family education sessions
After completion of the group education sessions for both adults and children, the AC completed at least one individual family education session. During this session, the AC reviewed key teaching points, answered questions the family raised, and verified the child’s ability to use a peak flow meter and inhaler with a spacer. The AC tailored the education and assistance for the family in accordance with the child’s ARAT results. The core intervention comprised the initial testing and evaluation, group education, and individual family sessions.
After the initial group sessions, participants in the study were called every 2 months for 2 years. An independent survey research group that was not aware of the participants’ assignment to intervention or control arms conducted this part of the study. The primary outcome measure was the self-reported maximum number of symptom days (wheeze, loss of sleep, or reduction in play activity) caused by asthma measured by a 2-week recall. Hospitalizations and unscheduled visits were the secondary outcomes, which were assessed by 2-month recall at each contact.
Recruitment and Characteristics of the Study Population
To be eligible for participation in the study, each child had to meet at least one of the following severity criteria during the 6 months before recruitment.
- Use two or more asthma medications
- Have one or more asthma hospitalizations
- Have one or more unscheduled visits for asthma
- During the 2 weeks before recruitment, have respiratory symptoms for more than 2 days or sleep disruption from these symptoms for more than 2 nights
Lists of eligible children were generated from three sources: participants in phase I of NCICAS, children with asthma identified in the emergency department, and children with asthma identified in primary-care clinics. Some 2847 children were screened and 1196 of those were eligible.
All study participants completed a 2 hour baseline assessment during which investigators collected information about the children’s health, hospitalizations and unscheduled medical visits in the previous 2 months; asthma symptoms in the previous 2 weeks; characteristics of the home environment; and medical care. Psychological status was measured for the caretaker by the symptom inventory. A child behavior checklist was used to acquire similar status for the children.
All children received a skin-test for cockroach, dust mite, cat, dog, rat, and mold allergens. Baseline interviews were completed for 1033 children who were then randomized; 515 children to the intervention group and 518 children to the control group. All children in the study were aged 5-11 years, either English- or Spanish-speaking with physician-diagnosed asthma. They lived in inner-city census tracts where at least 20% of the population lived below the federal poverty guidelines in each of the eight study locations (New York City; Detroit; St. Louis; the Bronx; Baltimore; Cleveland; Washington, DC; and Chicago).
The primary outcome measure was the maximum asthma symptom days calculated as the mean number of symptom days over a 2-week period averaged over the six measurement periods for each of the 2 years of follow-up (Table 1). At enrollment, the intervention and control groups each had the same number of maximum symptom days. Averaged over the first 12-month assessment period, the intervention group reported 3.51 symptom days in the 2 weeks before follow-up interviews, compared with 4.06 symptom days for the control group. This more than half a day reduction in symptoms in a 2-week period, when extrapolated over the course of a year, eliminated more than half a month of symptoms for all intervention group children in this study. The difference in symptom days during the first year – the AC intervention year – was maintained the following year – year two. Here, children in the intervention group had an average of 2.64 days of symptoms across the 2-week follow-up period, whereas children in the control group had 3.16 symptom days.
Secondary outcome measures included hospitalization and unscheduled acute-care visits (emergency or physicians’ office) per year for asthma. In both study years the differences between the intervention group and the control group in the percentage of children requiring hospitalization approached significance. In year one, 14.8% of the intervention group and 18.9% of the control group required one or more hospitalizations. In year two, 10.2% and 13.8%, respectively, required hospitalization. Unscheduled acute-care visits did not begin to decline until the second year (Table 1). For additional information, see R. Evans, P.J. Gergen, H. Mitchell, et. Al., "A Randomized Clinical Trial to Reduce Asthma Morbidity Among Inner-city Children: Results of the National Cooperative Inner-City Asthma Study") that was published in 1999 in volume 135 of the Journal of Pediatrics.
*Maximum symptom days
|1 or more hospitalizations in the past year (%)||14.8||18.9|
|Number of unscheduled visits per year||2.6||2.9|
*Maximum symptom days
|1 or more hospitalizations in the past year (%)||10.2||13.8|
|Number of unscheduled visits per year||1.9||2.2|
* Numbers represent the mean of maximum symptom days for 2 weeks averaged across the 12-month follow-up period.
The intervention had the greatest effect in the most severe asthma subgroups, showing a reduction of maximum symptom days that was four to five times greater than the milder groups. Calculated over a 1-year period, it eliminated more than 1.5 months of symptoms for children with the most severe asthma.