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: Operation of Replicated Program
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.
|El Rio ICAI Activity
||Time Frame||Coordination with Primary Care Visit|
|First individual family counseling session: 60-90 minute intake session with child and parent for testing, evaluation, and initial orientation and training||First week
||1-2 weeks after a primary care visit when the child’s asthma is under better control|
|Asthma education sessions, 2 each for adults and children in parallel on successive weeks in the evening||Within the first 4-6 weeks|
|Second individual counseling session: review of test results, instructions about use of medicine plan, discussion of home environment changes, development of daily asthma plan with the child.||At 2 months||Held on the same day as scheduled primary care follow-up. Physician gives family completed action plan|
|First follow-up phone call to discuss problems and changes in the environment with parent||At 3 months|
|Second follow-up meeting: conduct a 24 hour recall with the child and relaxation practice||At 4 months||Family scheduled for both a primary care follow-up visit and ICAI visit the same day|
|Fourth follow-up meeting conduct the true/false asthma quiz with the family||At 6 months|
|Eighth follow-up meeting to repeat spirometry, review inhaler, peak flow meter, and diary skills||At 10 months|
|Third, fifth, seventh, and ninth follow-ups are phone visits, home visits, primary care visits as needed and as can be arranged||At 5, 6, 7, and 9 months.||Last contact is to make a primary care appointment.|
|Tenth follow-up||Primary care physician visit|
Details of the program
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.
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
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.
|Recently, have you had any problems with||Has anything changed in the child’s asthma care?|
|Seeing the doctor?||Medications|
|Talking with the doctor about asthma?||Asthma management plan|
|Getting medications refilled?||Home|
|Getting the child to take the medicine?||How you care for the child|
|Following the asthma care plan?||Pets in the home|
|Using a spacer?||Cockroaches|
|Using a peak flow meter?||Asthma symptoms getting worse|
|The child taking medications at school?||Asthma symptoms getter better|
|Your child being exposed to smoke?|
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).
|How many times in the past 2 weeks has your child||How many times in the past 2 months has your child|
|Complained of asthma symptoms: cough, wheeze, shortness of breath, tight chest?||Missed school because of asthma?|
|Had coughing or wheezing at night?||Come home from school because of asthma?|
|Had to stop an activity because of asthma?||Kept anyone home from work because of asthma?|
|Not been able to run or play because of asthma?||Had an unplanned visit to the doctor for asthma?|
|Used the rescue medication?||Been in the hospital emergency department because of asthma?|
|Been admitted to the hospital because of asthma?|
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.
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.
|Adult’s Group Sessions||Children’s Group Sessions|
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.