Controlling Pediatric Asthma Through Collaboration and Education
Progress Report
1/1/06-6/30/08
Executive Summary
RATIONALE:
Asthma is a chronic respiratory disease that is characterized by inflammation of the airways and episodes
of obstruction brought on by various stimuli. It is the most common chronic disease among U.S. children,
affecting nearly 13% of children nationally. The burden exerted by asthma is much greater among low
income, minority and urban communities. However, recent evidence suggests that rural areas do not have
lower asthma prevalence and morbidity as had been previously believed. While asthma cannot be cured, it
can be effectively managed.
PROJECT OVERVIEW:
In the spring of 2006, the Illinois Department of Public Health (IDPH) designed a state-wide asthma
initiative entitled Controlling Pediatric Asthma Through Collaboration and Education (CPATCE), which
seeks to reduce asthma morbidity and healthcare expenditures, and improve the quality of life for the
children with asthma and their families living in Illinois. CPATCE builds upon a successful Community Lay
Health Educator (LHE) model developed by the Sinai Urban Health Institute (SUHI) and Sinai Children’s
Hospital in Chicago. The Sinai Urban Health Institute has been designated as the evaluation and training
center for the initiative. Results of this initiative are being carefully monitored to ensure that the program is
meeting its goals, that the effort is effective, and that the findings will guide future steps.
GOAL:
The project seeks to improve asthma management among children with poorly controlled asthma living in
targeted communities and thereby: (1) decrease asthma-related morbidity; and, (2) improve quality of life.
Specifically, we aim to accomplish the above goals by improving the asthma-related knowledge of
children’s primary caregiver(s), improving their confidence (i.e., self-efficacy, empowerment) in their ability
to properly manage their child’s asthma, decreasing the number of triggers to which children are exposed in
their homes, increasing the number of children who are on the proper asthma medications, and increasing
the number of children who have a written asthma action plan that they understand.
PARTNER CONSORTIA:
The six sites that were selected by IDPH were believed to suffer a disproportionate asthma burden (asthma
hospitalization rates above the State average) and also had existing Asthma Consortia that could be
mobilized in administering the LHE model. The funded consortia initially included:
 Bureau/Putnam Asthma Team (Counties: Bureau, Putnam)
 Chicago Asthma Consortium (Counties: Cook)
 Decatur Area Asthma Coalition (Counties: Macon)
 Northwestern Illinois Asthma Coalition (Counties: Henry, Knox, Stark) (funded through 5/16/2008)
 Rockford Asthma Consortium (Counties: Boone, Ogle, Stephenson, Winnebago)
 Washington County Asthma Coalition (Counties: Washington) (funded through 6/30/200).
INTERVENTION:
CPATCE utilizes LHEs from targeted communities to deliver case-specific asthma education in the home
environment. LHEs are recruited from the same communities being targeted by the intervention. The
LHEs do not need to have any prior experience with asthma. Rather, we were interested in locating
individuals with a cultural connection to the targeted communities and a passion for positively impacting on
the lives of the people living within those communities. Once the LHEs were identified, they participated in
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a 3 day, 6 hour per day (total 18 hour) train-the-trainer asthma workshop. LHEs were further trained by
their respective sites, and also participated in on-going training events sponsored by SUHI.
After obtaining Institutional Review Board approval, each site began recruiting for their respective program.
The sites vary slightly in their methodology for identifying and recruiting participants. Recruitment sources
utilized by different sites include: emergency departments, inpatient units, physician referrals, WIC
programs, daycares, pharmacies, and schools, among others. The LHEs meet with families three times
over a six month period: baseline, two months later, and six months post-baseline. The education is
tailored to the family’s unique needs, and is provided in the family’s home whenever possible. Each
session lasts between 60-90 minutes. The LHE also serves as a liaison between the family and the
medical system.
EVALUATION:
Our success in meeting the project’s goals is being evaluated using a pre-post test methodology with each
child serving as his/her own historical control. The main outcomes assessed include asthma symptom
severity (in the past 2 weeks), frequency of asthma-related emergency health resource utilization, caregiver
quality of life, asthma-related knowledge of the caregiver, and the belief (self-efficacy) of the caregiver that
he/she is able to manage the child’s asthma. In addition, we assess whether the intervention is effective in
decreasing the number of triggers to which the child is exposed, whether medications are being used
correctly, and whether families have an Asthma Action Plan that they understand how to use.
ROLE OF SINAI URBAN HEALTH INSTITUTE AND SINAI CHILDREN’S HOSPITAL:
IDPH has funded SUHI to serve as the training, evaluation and coordinating site for the project. Sinai
Children’s Hospital has also been funded to expand our LHE program locally. In our role as the training
site, we have developed the Sinai Asthma Education Training Institute. The Training Institute was originally
established to coordinate the training of LHEs in the six priority areas identified by IDPH, and the
implementation of the peer education model on a wider scale. SUHI also serves as the primary evaluator
of the Initiative’s success.
PROGRESS REPORT:
All partner sites participated in an all day meeting on March 27, 2006, at which time the CPATCE initiative
was introduced along with respective roles and responsibilities. All sites then met individually with the Sinai
steering committee in May 2006 to discuss their unique needs in implementing the CPATCE project. An
18-hour LHE train-the-trainer workshop was hosted by the Sinai Asthma Education Training Institute in
each area. All site’s have implemented the CPATCE project in their community and are actively recruiting
participants. As of June 30, 2008, 457 participants throughout Illinois have been enrolled into the CPATCE
program, 208 have completed the entire 6 month intervention phase, while 159 remain active. Ninety
(19.7%) have been lost to the study.
Recruitment, Implementation and Baseline Characteristics by Site:
Bureau/Putnam Asthma Team: Bureau and Putnam are two rural counties located in northwestern Illinois,
with a combined population of just over 41,000 people. The CPATCE initiative was instigated by the
Bureau/Putnam Asthma Team in October 2006. The site has experienced considerable difficulty with
recruitment into their program, recruiting only seven children in nearly two years (through 6/30/08). Several
factors have been identified that might be impeding on the ability of the site to recruit participants. For one,
the Bureau/Putnam Team believe that asthma is under diagnosed in their community, having noted that
many children in the community have had asthma inhalers prescribed to them but do not have a physician
diagnosis of asthma. Similarly, asthma is not recognized by medical personnel as a problem and therefore
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it has been difficult to establish buy in from the medical community. Finally, the community seems to
embrace the traditional medical model of health care delivery and the need for extra programs such as
CPATCE to support health care providers is not readily recognized.
While several steps were taken to address these barriers (e.g., screening children for asthma rather than
asking about physician diagnosis, going directly to parents rather than recruiting through medical practices,
etc.), recruitment continues to be a barrier.
Chicago Asthma Consortium: The Chicago Asthma Consortium (CAC) has partnered with the Respiratory
Health Association of Metropolitan Chicago (RHAMC) to implement the CPATCE project in several high
risk communities on Chicago’s Southside. Two fulltime and one halftime LHEs were hired by the site.
Ninety-eight children have been enrolled into the project via the CAC/RHAMC site, the majority of which are
non-Hispanic Black (90%). The average child is 8 years old, and 64% of enrolled participants are insured
by Medicaid or AllKids, while 34% have private insurance. When urgent health resource utilization was
summed into a single variable including total ED visits, hospitalizations, and urgent care physician visits,
the average child enrolled into the study to date had used an urgent health resource 4.2 times in the year
prior to the baseline visit. Caregivers reported that their children’s lives were so affected by asthma that
they were unable to carry out their usual activities six times in the past year.
Decatur Area Asthma Coalition (DAAC): Decatur is a smaller metropolitan area of approximately 82,000
people located in Macon County in central Illinois. One fulltime LHE was hired by the site. Eighty-four
children have been enrolled into the CPATCE project via the DAAC site. The study population is 65% nonHispanic Black, 20% non-Hispanic White, and 15% mixed race/ethnicity. Nearly all (97%) of enrolled
children are insured by either Medicaid or AllKids. Urgent health resource utilization was similar to the
Chicago sites. When all urgent health resource utilization was combined into a single variable, the average
child had either been to the ED, hospitalized, or to a doctor for worsening asthma symptoms 5.6 times in
the year prior to the intervention. Caregivers reported that their children’s lives were so affected by asthma
that they were unable to carry out their usual activities 6.7 times in the past year.
Of all participating sites, Decatur has experienced the least trouble with recruitment. At least a portion of
this site’s success must be attributed to the strong relationship that the DAAC has with the Community
Health Improvement Center (CHIC), a Federally Qualified Health Center. The site’s program director works
for CHIC, and the LHE has her office in CHIC, which allows her to see asthmatic children when they come
to the clinic and is useful for both recruitment and retention.
Northwestern Illinois Asthma Coalition (NIAC): The NIAC operates out of the Knox County Health
Department and services three counties in rural northwestern Illinois: Henry, Knox and Stark. The three
counties have a combined population of 110,000 people. One fulltime LHE was hired by the site. For
several months following the inception of the program, NIAC experienced considerable difficulty with both
recruitment and retention. In fact, between 10/1/06-8/1/07, NIAC was able to recruit only 10 children into
their program. During the summer of 2007, NIAC and Sinai spent time discussing new strategies to
heighten the community’s awareness of the program. The LHE implemented some of those strategies, and
an immediate peak in recruitment occurred, resulting in 22 children eventually being enrolled into the
program.
Unfortunately, the program’s director left her job in April, and the LHE soon followed. The NIAC made the
decision to end the site’s participation in the CPATCE program rather than rehire and retrain. The decision
was a logical one given that despite diligent efforts on the part of the LHE, the NIAC program had not been
able to enroll enough participants to justify continued funding. As mentioned above, it seems that the LHE
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model may not be the most suitable for a rural community, especially one as vast and sparsely populated
as that serviced by the NIAC.
Rockford Asthma Consortium: The Rockford Asthma Consortium is closely affiliated with the Rockford
Regional Health Council and serves the counties of Boone, Ogle, Stephenson, and Winnebago in far
northwestern Illinois. The four counties have a combined population of 441,000. With a population of
approximately 150,000, Rockford is the largest city in the area. Unfortunately, the Rockford Regional
Health Council has undergone considerable structural changes in the past two years that have made it
difficult to implement and firmly establish CPATCE in the area. To date, the site has enrolled only 10
participants. While working with Rockford has been a frustrating process, ultimately it is a site that
desperately needs intervention and where the infrastructure is in place within which the LHE model can
effectively work.
Sinai Children’s Hospital: Sinai began enrolling into the current phase of the project on March 30, 2006.
However, the site was not fully staffed with three fulltime LHEs (one bilingual in Spanish) until January
2007. Two hundred thirty-six children have been enrolled into the program at Sinai, of which approximately
half (41.0%) are Latino and half are non-Hispanic Black (49.0%). Seventy-nine percent of participating
children are insured by Medicaid/Kidcare and another 4% have no insurance. The children enrolled to date
have very severe, poorly controlled asthma. When urgent health resource utilization was summed into a
single variable including total ED visits, hospitalizations, and urgent care physician visits, the average child
enrolled into the study to date had used an urgent health resource 5.7 times in the year prior to the baseline
visit. Caregivers reported that their children’s lives were so affected by asthma that they were unable to
carry out their usual activities nearly eight times in the past year.
The multiethnic Sinai sample lends power to critically look at how the model is received by different
populations, offering insight into the delivery of culturally appropriate disease management programs.
Preliminary process analyses and examination of baseline characteristics suggest that African American
participants suffer considerably more from asthma than do their Latino counterparts, either because they
have more severe asthma or asthma that is not as well controlled. Nonetheless, while African American
children may be more in need of the program, an examination of process measures suggests that Latino
participants are more receptive to both participating in the program and to completing the program once
they have enrolled. We have been unable to find any published research documenting cultural differences
in how a LHE model is accepted by different communities. Some theorized reasons behind the difference
include: (1) a historical lack of trust for medical and research programs within the African American
community; (2) while all communities being targeted by the program are poor, the African American
communities targeted are poorer and caregivers may have additional stresses in their lives which impede
their participation; (3) social support networks may be different in the two communities and may influence
the way the program is utilized; (4) LHEs and health professionals who make home visits are common in
Mexico potentially leading to a greater acceptance of the model.
Washington County Asthma Coalition: Of all the coalitions that were selected to participate in CPATCE, the
Washington County Asthma Coalition had the smallest target population. When the Sinai Team initially met
with representatives from the Washington County Asthma Coalition in June 2006, several potential barriers
to implementing the program were discussed. Over the first several months of the project, Sinai met with
and talked with the Washington County Asthma Coalition regularly to work through these anticipated
barriers. Nonetheless, over the next several months Washington County was not able to enroll even one
participant into the intervention. The Washington County Asthma Coalition’s CPATCE project was officially
closed on August 9, 2007.
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Preliminary Outcomes Through Six Months of Follow-up:
As of 5/31/08, 107 Sinai, 32 CAC, and 47 Decatur participants had completed six months of follow-up.
Preliminary findings through six months of follow-up suggest that progress has been made towards both
primary goals. Specifically, participants at all three sites experienced statistically significant improvements
in all four symptom-related variables and in the majority of the urgent health resource utilization variables
examined. Also, Parental Quality of Life scores (as measured by the Pediatric Asthma Caregiver’s Quality
of Life Questionnaire) (Juniper EF, Guyatt GH, Feeny DH, et al., 1996)) at all three sites increased between
the baseline and 6-month follow-up visit by a level that is both statistically and clinically significant (Juniper
EJ, Guyatt GH, et al., 1994).
LESSONS LEARNED & CHALLENGES:
This brief overview of each site’s activities and progress highlights the successes and complexities that are
associated with implementing a program of this nature in multiple, diverse settings. However, each site has
also demonstrated its individual strengths and several important lessons have been learned to date.
Recruitment: Sufficient time and resources need to be allocated specifically to establishing relationships
within the community, publicizing the program, securing buy-in, and identifying viable recruitment sources.
In order to ensure success, the entire community must be inundated with information about the program
and the program must coordinate with existing programs and services.
Retention: The lives of participating families are often complicated and asthma is often not a priority.
Participants tend to move often, and phones are frequently disconnected when paying other bills takes
precedence over paying the phone bill. As a result, retention can be challenging. However, CPATCE sites
have developed novel methods for improving retention, such as collecting contact information on family
members and friends that could be contacted if the program is unable to reach the participant,
birthday/holiday cards to program participants, etc. However, the most important method to improving
retention is for the LHE to simply establish a good relationship with the family and to gain their respect.
Changing the mindset of a community: The initiative’s immediate goal is to improve asthma outcomes and
quality of life among children with severe asthma by educating their families on effective asthma
management. Ultimately however, we also need to impact on the mindset of the entire community. Making
an entire community aware of the impact that asthma has on their community, its potentially devastating
effects on a child, and educating key community members about preventing and responding to asthma
attacks is vital in ensuring a healthy community for all.
Rural Communities: Implementing a LHE model within rural Illinois communities has proven to be
particularly challenging. Rural communities tend to be smaller, with limited resources, and a certain
ideology of medical care delivery. While LHE models have been utilized effectively in other rural
communities both in the United States and other countries, it does not seem that Illinois rural communities
are ready to embrace this approach. Given such a model may be ideal in supplementing coverage within
medically underserved rural communities, hopefully this mindset will change over time. However,
considerable resources would need to be devoted to overcoming barriers and establishing support of a
LHE model in rural Illinois communities.
Training LHE & Quality Assurance: Cultural sensitivity and perspective are the most vital characteristics in
a LHE. Therefore, a greater emphasis is placed on a LHE being indigenous to a respective community
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than is placed on prior experience in asthma or health education. However, that means an investment
must be made to continuing the training beyond the initial 18-hour session. The skills required to be an
effective LHE go beyond knowing the facts of asthma to learning to communicate information effectively,
having the analytical skills necessary to address unique situations, the organizational skills to manage a
case load, and certain computer skills. Such skills may need to be honed during the training period and
continuing education is a must. It is also vital that each LHE have a supervisor who is readily available to
support him/her and address unique situations as they arise. Decatur, Chicago Asthma Consortium and
Sinai Children’s Hospital have such individuals in place and readily accessible, and it is these three sites
that are have experienced the greatest success.
Importance of a Coordinating Site: A multi-site project of this nature could not sustain itself without the
efforts of a coordinating site. IDPH’s wisdom in utilizing Sinai as the coordinating, training and evaluation
site for the project cannot be overstated. Our experience in implementing pediatric asthma intervention has
given us the insight we need to guide the other sites through their growing pains. The Sinai Team has
been readily available to each coalition to contact as needed, has co-facilitated (along with IDPH)
conference calls and all site meetings, and has provided initial and continuing education around asthma
education, data collection, and data entry to all appropriate CPATCE staff.
Managing the Project with Limited Resources: Several of the sites have had difficulty managing the project
with the limited resources they have been provided. IDPH was wise in working with areas that have
established asthma coalitions; however those coalitions do not generally have the infrastructure in place to
run large evidence based research programs. In order to run most efficiently, the program requires a LHE,
Program Manager, and Research Assistant at each site. It is challenging to find the time necessary to
focus on recruitment, education, data collection, data entry, and administration without a more
comprehensive program staff.
CONCLUSIONS:
During the initial 2.5 years of the CPATCE project, tremendous strides were made in implementing the LHE
model within three of the seven organizations originally selected by IDPH to employ the model within
priority areas (the Chicago Asthma Consortium, the Decatur Area Asthma Coalition, and Sinai Children’s
Hospital). The organizations selected which service more rural areas have faced considerable difficulty in
overcoming the significant barriers to implementation that they face within their community. While LHE
models have been utilized effectively in other rural communities both in the United States and other
countries, it does not seem that Illinois rural communities are ready to embrace this approach. Given such
a model may be ideal in supplementing coverage within medically underserved rural communities,
hopefully this mindset will change over time.
The baseline data gathered to date suggests that the 457 children enrolled to date are in dire need of
intervention to improve asthma outcomes. A LHE approach is relatively inexpensive, and if the
improvements in asthma control and urgent health resource utilization noted in the preliminary data
analysis continue, this approach will be associated with substantial cost-savings for payers and health
systems.
We do not know how to prevent children from acquiring asthma, but we do know how to help them control
their disease so that they can live full and productive lives. It is hoped and expected that the CPATCE
initiative will make that promise a reality for the children of Illinois. If the final evaluation demonstrates
improved asthma outcomes in the target areas, then this program should be further disseminated to other
urban and small metropolitan areas throughout the state.
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