Asthma Program

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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.

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
• Evaluation

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.

Learning approach
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.

Evaluation Design
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.

* 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.

The research intervention and evaluation was supported by a grant from the National Institute of Allergy and Infectious Diseases, National Institutes of Health.

Previously reported asthma interventions that employed an asthma specialist working with a nurse case manager were found not to be cost effective. NCICAS researchers did not want to circumvent or interfere with established doctor-patient relationships. Rather, they wanted study families to be able to work with their primary-care physicians to acquire their asthma medicine prescriptions and to obtain asthma action plans for the children. To achieve these ends, the AC educated families on how better to communicate their children’s health condition to their doctors and to take steps to acquire an approved action plan from the doctors. Both in the group and in individual education sessions the AC reviewed the objectives with the caretakers and worked with the families to achieve them.

Inner-city children and their parents live in highly challenging, difficult environments. Families often face economic uncertainty and live in homes or apartments with poor ventilation and high levels of allergens. Frequently, these children have multiple caretakers and little continuity of health care. Many factors disrupt everyday life, and often health-care concerns are overshadowed by more immediate problems. The AC, skilled at providing the caretakers with referrals to existing community resources for such issues as smoking cessation and psychological and social concerns, worked to help parents cope successfully with this adverse environment. The referral effort was an important component of the program that enabled caretakers to better focus on the skills and behaviors needed to control the child’s asthma.

All families were given pillow and mattress covers for their children’s beds and were encouraged to minimize exposure to environmental tobacco smoke and pets. For children with a positive cockroach skin test result, the families were instructed on ways to reduce cockroach food sources and received two professionally applied insecticide treatments.

After the core intervention, the AC and caretakers met in person at least once every 2 months for a year, and they spoke on the telephone on the alternate months. The number of times they talked, as well as the length of contacts and the content of those discussions, were based on the family’s asthma risk profile as assessed by the Asthma Risk Assessment Tool (ARAT) and other problems or issues that developed. The ARAT, derived from the baseline assessment, included information on exposure to allergens, allergen sensitivity, smoking, access to care, adherence, and measures of adult and child mental health. The ACs were allowed the flexibility to determine the number of contacts with the family on the basis of the family’s unique needs. These included helping the family better adhere to medicine, improving the environmental conditions in the home, avoiding asthma triggers, or communicating more effectively with the doctor.

The El Rio site adheres to the overall ICAI objective to decrease symptom days in inner-city children with asthma and thereby improve their quality of life and decrease unscheduled medical-care visits and hospitalizations. Supporting goals stated by the program managers and the staff include increasing children’s physical activities and keeping them in school. The program also empowers parents to manage their children’s asthma effectively and helps them acquire the assets and resources needed to manage the disease.

Goals that apply directly applicable to the family are as follows:

• Determine the child’s asthma triggers and take action to prevent exposure to them.
• Obtain and follow a written medicine plan from the doctor.
• Use appropriate asthma medications.
• Develop a partnership with the child’s doctor.
• Learn to use appropriate tools (spacer, peak flow meter, asthma log) to help manage the child’s asthma.
• Coordinate the child’s asthma care with his/her school.

Most of the children in the program are patients at the El Rio Health Clinic. In most instances, a parent brings his/her child with asthma to the clinic when the child is sick. A pediatrician examines the child and may refer the family to the asthma program, based on the child’s asthma severity and the family’s need for education and additional assistance. The ICAI program office is located in the El Rio pediatric clinic. The parent of a sick child is concerned about helping the child at this time and is usually interested in the asthma program. The AC acquaints herself with the family and schedules the intake appointment as soon as the child is expected to recover from the exacerbation, usually within the following week or two. A few children are referred to the asthma program from other medical locations within the city.

All children in the El Rio ICAI program are 6-12 years of age. They are eligible for Medicaid or state health care assistance. About 74% of the children are Hispanic, 15% are Yaqui Indian, and 11% are white or African American. Most come from medically underserved areas in the Tucson area. About 45% live in homes where someone smokes.

The El Rio ICAI core program and follow-up span a 12-month time period that starts when a family is enrolled. Families enrolled in the program receive a peak flow meter, spacer, a binder containing many asthma-care resources, and the asthma education books (one each for the parents and the child). The family also obtains free allergy testing, free spirometry, an asthma care plan, and supplies to help control allergies (children who test positive for dust mites or who have significant persistent symptoms are given mattress and pillow covers). The testing, evaluation, education, and counseling occur over the first several months. Some of the ICAI intervention processes at El Rio are coordinated with the child’s visit to the clinic’s pediatrician. Where applicable, the AC schedules the family for the physician visits and arranges counseling and follow-up sessions for the family while they are at the clinic. Table 2 describes all the scheduled intervention activities over the 12-month period for an individual family, the time frame of these activities, and the junctures between physician and ICAI visits. The children who complete the core intervention, i.e., who agree to the allergy testing, keep an asthma diary, attend the asthma education classes, and receive their asthma care plan, receive a $20 gift certificate to Target department store. The reward is important to achieving a high level of program completion.

First individual counseling session:
Each child entering the program attends a 60-90 minute counseling session, with an accompanying parent or caretaker. At this time, the Clinical Asthma Risk Assessment Tool (CARAT) form and a psychosocial assessment form are completed. Allergy skin testing is administered to all children for dust mite, roach, rat, cat, dog, and mold. Additional allergy testing may be conducted for high allergy grasses, trees, and weeds. Spirometry also is performed. The family is instructed how to use a spacer with the inhaler and a peak flow meter and how to keep an asthma diary. An overview of asthma medications and the use of the asthma action plan are introduced. In instances where parents do not speak English, both the AC and the RT participate in the intake meeting. The RT performs the allergy testing and the spirometry pre- and post-tests, and trains the parent, in Spanish, on use of the spacer, peak flow meter, and the asthma diary. The AC conducts the psychosocial assessment and instruction about spacer use, peak flow, and asthma diary in English for the children.

Group education:
Families are scheduled to attend asthma education sessions in the evenings in a facility adjacent to the pediatric clinic, usually within 2-4 weeks after the first individual counseling session. Two sessions are held consecutively and last about 90 minutes each. The parents’ class meets separately from the children’s class but at the same facility and during the same time.

Second individual counseling session:
At the second individual counseling session, after group education, the AC (and the RT as needed) discusses with the family the spirometry results and the results of the allergy test. She reviews the use of the medicine plan (which was provided to the family that day by the primary care physician) and discusses changes in the home environment. The child is asked to help develop a Daily Asthma Plan with the AC based on the now-available information from the completed Asthma Action Plan, the allergy test results, and information from the asthma class. Finally, the family receives a binder that becomes their primary asthma resource. The binder contains the following important information:

• Results of skin test and spirometry
• A copy of the Asthma Action Plan
• Forms to use for recording peak flow
• Important phone numbers for asthma help
• Colored photographs of the major allergy-causing grasses, weeds, and trees
• Colored handouts on goals for eliminating specific allergens (i.e., cockroaches, mold, pet, dust mites, rodents, and environmental tobacco smoke)
• Guidance on deciding whether to go to school
• Smoking cessation information
• Description of relaxation techniques
• Specific information about referrals

First follow-up:
The first follow-up is a phone call to the parent about 3 months after enrollment. The purpose of this call is to review and discuss environmental changes in the home, taking supplies and information to the school, and resolution of barriers to using the asthma action plan.

The objective of this first follow-up telephone conversation is to obtain as much information as possible about problems and changes that can affect the child’s asthma. The parent responds "yes" or "no" to a series of questions (Table 3). The responses to these questions help the AC determine what assistance the family may need and how the AC can help.

Additionally, during the first maintenance call, the AC queries the parent about the child’s asthma symptoms and probes about whether the child’s asthma is improving, worsening, or staying about the same as when the child went through the core intervention (Table 4).

Second follow up meeting:
The second follow-up meeting, at 4 months, is coordinated with the primary care follow-up visit. This meeting takes place before the family sees its doctor and consists of a 24-hour recall to assess use of medications and the daily asthma plan. The child is asked to recall everything he/she did the previous day from awaking to going to bed. The child also completes 15 sentences, which together reflect the child’s level of self-efficacy and asthma behavior. A brief relaxation exercise is conducted with the child and adult together.

Fourth follow-up meeting:
At 6 months, the family and child again meet with the ICAI staff. The AC administers a 35-question true/false quiz that is used to gage retention of asthma knowledge. Instruction is provided as needed to correct knowledge gaps.

Eighth follow-up meeting:
The child and family meet again with the ICAI staff. The family participates in a controller/rescuer game that verifies its understanding of the medications the child is taking.

Maintenance sessions:
Between the above in-person visits, the staff completes follow-up telephone visits, or optional home visits, or visits with the family during primary care appointments to check on the child and offer assistance as needed.

Children with multiple indoor allergies are visited at home. The parents are expected to make the environmental changes before the home visit on the basis of what they learned in the education sessions, guidance provided by the staff and written instructions provided in the binder. Parents are generally open to this exchange within their home, and children are usually proud to show the staff how they have cleaned their room and where they keep medications, supplies, and the notebook. Home visits may be conducted, too, for families who are experiencing problems controlling asthma. In the 11th month, the staff calls to schedule an appointment with the family to see the primary care provider. At 12 months the primary care visit is completed and the staff reviews skills with the family. The intervention is complete, and the child is awarded a certificate.

Assisting the families:
The El Rio AC performs a myriad of tasks to help families ameliorate conditions affecting their children’s asthma, for example:

• She wrote a letter to the city housing authority requesting installation of a new air conditioner in a home with a child with severe asthma. The city installed the air conditioner.
• She helped several mothers convince their landlords to replace moldy tile and replace old carpeting.
• She assisted several families in gaining extensions on homework for their children so they could successfully complete their school year at grade level. Several school children in the program were in danger of failing in school because they missed assignments during absences from class. (One mother was delighted that her child had only missed 15 days of school in the 2001-2002 school year. In the previous year, before entry into the program, the child had missed 45 school days.)
• The AC helped these parents apply the 504 plan with school officials so they could have homework sent home and the children be allowed some extra time to complete work missed because of to asthma-related absences. All the children reported back that they passed this year in school.
• She wrote a letter to reverse a denial by the state Medicaid to switch the plan of one child to a plan that would cover his asthma medications.
• She arranged for several children to be enrolled in the Glaxo-Wellcome patient assistance program to receive medications for only $5 a month.

The El Rio instructors use the NCICAS program manual, A Guide for Helping Children with Asthma, to conduct both the adult and the children’s education sessions. The manual includes program goals; outlines the contents of each session; provides checklists to help instructors prepare for the sessions; lists all the materials, props, and learning devices needed to instruct the sessions, and gives suggestions for working with groups, and with small children (Table 5).

The adult group sessions use lecture and group discussion to teach participants about asthma. Activities, games, discussions, and role-plays also are used to prompt participation and keep interest in the children’s sessions. The children’s group sessions address many of the same topics as those in the adult group sessions, and they are geared to the developmental level of children.

The parents receive a copy of the Asthma and Allergies Foundation of America (AAFA) publication You Can Control Asthma: A Book for the Family (YCCA). Children receive a copy of You Can Control Asthma: A Book for Kids. The books are used in class, and participants are encouraged to refer to them at home to help them with asthma self-management. Whereas the topics and their sequence of delivery varies between the adult and children’s sessions, the information and sequencing in the YCCA books is similar enough so parents and children can follow along together in their separate books.

The children’s sessions are particularly interactive. For example, the AC invites a college student (usually her daughter) to attend the class. The invitee is always selected to be the pretend "asthma kid." This person wears a colorful asthma shirt with drawing of the airways with asthma on the front. The asthma kid has just received an asthma diagnosis and acts out several scenarios from the YCCA book in class that require the help of the students, who must tell the newcomer what to do (how to act) and answer his/her questions about asthma. Another example of a powerful interactive learning activity involves a fully decorated miniature bedroom in a cardboard box that is placed on the floor in front of the children. The AC tells about how the room came to be so messy and how it now is not a good place for a child with asthma to play or sleep. The children‘s must apply their knowledge of asthma triggers and their locations to making changes within the miniature bedroom that will reduce these triggers. Each child who changes the room is expected to explain why he/she made the change and how the change should reduce asthma triggers. Later in the intervention, the children are asked to make changes to the room where they sleep, and a home visit may be conducted to observe and comment on these changes.

The El Rio AC, along with other ACs received initial training on how to teach the asthma education classes in a program workshop conducted in April 2001. Additionally, they each attended 2 days of instruction on asthma epidemiology, etiology, and physiotherapy; asthma symptoms and triggers; medications; and self-management practices. After classroom instruction, the ACs spent time in a local asthma clinic for 2-3 weeks to observe patient care and to learn more about the diagnosis and treatment of the disease. New ACs to the program can receive initial train-the-trainer instruction through video instruction provided to the ICAI sites and complete on-the-job training under a senior AC in the program, or applicable alternative. Both the AC and RT are being coached by Dr. Manthei in preparation for the Certified Asthma Educator examination offered by the National Asthma Educator Certification Board.

Funding for this program is provided by a grant from the Centers for Disease Control and Prevention. The $100,000 grant is renewable for 3 years based on performance. A breakdown of operating costs for 1 year to carry out the program in Tucson is as follows:

• Salary and benefits for a full-time AC: $40,000
• Salary and benefits for a part-time RT: $20,000
• Office supplies, printing and reproductions: $ 1,200
• Medical supplies (allergy test supplies, spirometry mouthpieces, etc.): $ 2,000
• Peak Flow meters for home and school: $ 1,000
• Spacers for home and school: $ 1,400
• Mattress and pillow covers: $ 1,860
• You Can Control Asthma books: $ 800
• Rewards: child and family for program completion: $ 3,200
• Total: $72,600

Salaries in Tucson may be considerably lower than in many urban centers in the country. Office space, classroom space, furniture, utilities, and custodial services are covered by the clinic. The directors do not receive compensation for their oversight of the program.

The program is evaluated by several means:

• Monitoring enrollment status to determine the number of families who complete and who drop out of the program
• Pre-assessment and post-assessment that includes spirometry results and the child’s activity and school participation, parents’ asthma knowledge by a true/false quiz and the child’s skill administering asthma medicine, performing peak flow, and keeping an asthma diary
• Parent and caretaker satisfaction with the intervention

In the first year, the El Rio ICAI program enrolled 109 children from 101 families. Ten families were lost to follow-up before completing the core intervention. Ninety-one of these children completed the core intervention. Six were lost after completing the core, leaving 85 in the program. Seventeen families from the first year have completed the entire intervention; the other 68 families enrolled during the first year continue to progress. Seventeen new families have been added to the existing 68 families, for a total of 85 families (five above the target) still participating in the program as of June 2002. The following information is known about the 17 families and children who have completed the intervention.

• All the families have indicated that their child’s asthma is much improved
• All spirometry has remained steady or improved. In both cases (unchanged or improved) all results are normal or close to normal (however, this reporting period is during the summer, the low asthma season).
• Families display good knowledge of medication use and report regular daily use of controller medication.
• Several families have either quit smoking or are careful to not smoke in the house or car.
• All families indicated improvement in keeping the house free of dust. Several families removed carpeting and stuffed animals.

Tailored intervention
The asthma counselor’s training, education, and experience in social work, combined with the open-ended intervention approach, encourage the AC to tailor the intervention to the needs of each of the children enrolled in the program. The AC is uniquely positioned to help families address a wide variety of problems related to the physical and emotional aspects of asthma. In Tucson, where the client population is from various cultural backgrounds, great flexibility is needed to help effectively overcome barriers to asthma health care. The AC is uniquely positioned to devote adequate time to help families assess barriers to care and to obtain resources. Most families completing the program indicate they liked best two facts about the program: the program staff spent time discussing problems, and the staff cared so much about their children’s health.

Bilingual capability
The addition to the program of a Mexico-born bilingual RT greatly enhanced the program’s effectiveness and viability in Tucson. About 20% first-generation Mexico-born immigrant parents coming to the clinic and enrolling their children in the asthma program do not speak English. Fluent communication with the Spanish-speaking families about their children’s asthma and its treatment is essential. Also, parents and children can be educated simultaneously with two instructors, reducing time, travel, and disruptions to routines for families in the program.

Support from the administrators and physicians at El Rio
The clinic director located the ICAI office within the pediatric clinic just steps from the consulting physicians’ offices. This proximity facilitated a program connection to the underserved children that ICAI was designed to serve. Referrals from the clinic’s physicians to the asthma program are routine and easy to accomplish. Clinic management has recognized the value of the program in reducing medical costs. The Chief Financial Officer and the Chief Executive Officer are committed to continuing the program following completion of the ICAI funding. The physicians seeing children with asthma are enthusiastic supporters of the program. One doctor commented, "Our patients are coming in with so much more knowledge and involvement with their child’s asthma. Now it is easier to work with them."

Directors’ commitment
Both co-directors of the El Rio asthma program are highly motivated, committed, and involved in the program far beyond the program requirements. For example, many inner-city families do not have working vacuum cleaners. Dr. Enright acquires and rebuilds used vacuum cleaners in his spare time. In the first year of operation, he had donated over 30 machines to the program that are then provided to families enrolled in the program who have no vacuum cleaner. Furthermore, Dr. Enright has acquired 100 working used nebulizers for distribution to families in the program. Dr. Manthei accompanied the AC and the case study investigator on a home visit to a Pascua Yaqui Indian family. When Dr. Manthei learned from the mother that she was having trouble obtaining renewal of a prescription for her son’s asthma, he sat at the kitchen table and wrote an extensive message to the boy’s physician about new medications, describing how they interact and what doses are typical and then recommended the doctor contact him for further discussion if needed. He left the note with the mother to take with her to the doctor. Through professional and community contacts, Dr. Manthei actively raises funds to cover the purchase of items recommended but not specifically funded by the program (e.g., incentives, food vouchers). Several thousand dollars have been raised in the first year and commitments have been made for future funding for such purposes.

A program blueprint is in place
Program intervention activities and tasks to be carried out over the year by the AC are clearly described in detail in A Guide for Helping Children with Asthma, published by the National Cooperative Inner-City Asthma Study. The publication includes the best practices and lessons learned from implementing the NCICAS project. (The guide also provides the basis for the AC train-the-trainer course.)

Use of literacy-appropriate instructional materials with dozens of illustrations
The YCCA books used in the educational intervention have been tested over time and found to be effective with inner-city families. The parents’ book is written at the sixth grade level. The often-confusing health-care expressions and technical medical terms used by health professionals in the field have been converted to language that is understandable to the intended population. The El Rio AC and RT also have developed colorful handouts in English and Spanish for the families which supplement the information in the YCCA books.

Behavioral reward for children and parents
This program enrolled 101 families in the intervention in the first year. Only 10 were lost to follow-up before completing the core intervention. The program staff believes that offering a behavioral reward to the children contributes to this high number completing the core. Each child is promised a $20 gift certificate to Target for displaying responsible health-care behaviors by being tested for allergies, keeping an asthma diary, taking the asthma classes, and obtaining an asthma action plan from his/her physician. This has worked so well, that, to try to reduce the no-show rate for follow up appointments, the staff plans to try offering the parents a $20 gift certificate to Target for coming to these appointments.

Families feel comfortable coming to the community health center
They receive allergy testing, spirometry, instruction, and follow up visits in the same location. The ability to provide a one-stop approach for pediatric asthma care that dovetails with the child’s primary care visits is considered a plus.

The biggest challenge for the AC is in fitting all the office appointments after school during the school year. The AC and RT can usually only schedule their follow-up visits with the children from 3 to 5 p.m. on most weekdays (Monday, Tuesday, Thursday, and Friday) and on Wednesdays, when school ends early, for an extra 2 hours. They encourage the children to miss as little school as possible. With the high volume of referrals, 12 hours a week for appointments is insufficient. The appointment schedule is often booked over 2 weeks in advance. (Children with scheduled physician visits and sick child referrals are seen in the mornings, so mornings during the school year can be busy, too.)

Many families have difficulty making the follow-up visits because of work or lack of transportation. To overcome this problem, the AC and the RT are considering visiting some homes for the follow-up visits which routinely have been held in the AC’s office. They also try to see families at follow up primary care visits as often as possible.

The program staff expected the work could be confined to an 8 a.m. to 5 p.m. routine. However, about 50% of the mothers work, so ICAI staff cannot contact them until the evening hours. The staff has changed their work schedules to accommodate these families. Flexibility in the work schedule is key, but it burdens the ICAI staff and their families.

Knowledge of people’s likes and dislikes and their expectations for themselves and their children and for the program is important for an effective intervention. For example, because some American Indian families expect their children to self-manage their asthma, fully engaging Indian parents of older children in the program is sometimes difficult. Second, people in the El Rio program generally do not like the role-play exercises in the learning sessions or discussions of their children’s asthma history or condition. Compensatory measures are used to overcome these realities to meet the objectives. For instance, in this program, focusing the educational intervention on the child has been helpful, with parents participating in sessions and learning through interactions with the children. During introductions of the group session, children introduce the parents they brought with them, then the families split into group sessions. Third, slowing the educational intervention by allowing more time for participants to become acquainted and feel more comfortable in these roles also is advisable.

Organizations and businesses stand ready to help health-care programs. At El Rio, for example, Dr. Enright has obtained used vacuum cleaners and repaired them for use in homes where none previously existed. He also has acquired used nebulizers from a supplier at below market cost. Pharmaceutical companies donated $3,000 to purchase incentives for the families. A medical supply company donated spacers for use with inhalers. The American Lung Association provided peak flow meters at half price. Donations and cut-rate purchases help keep the program costs down.