(Chest. 1999;116:141S-145S.)
© 1999
American College of Chest Physicians
The Chicago Asthma Surveillance Initiative*
A Community-Based Approach to Understanding Asthma Care
Kevin B. Weiss, MD;
Evalyn N. Grant, MD and
for the
Chicago Asthma Surveillance Initiative Project
Team
*
From the Center for Health Services Research, Rush Primary Care Institute (Dr. Weiss), and the Department of Immunology/Microbiology (Dr. Grant), Rush-Presbyterian-St. Luke's Medical Center, Chicago, IL.
See Appendix for other members of the CASI Project Team.
Correspondence to: Kevin B. Weiss, MD, Center for Health Services Research, Rush Primary Care Institute, 1653 West Congress Parkway, Chicago, IL 60612
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Abstract
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Nearly
all of the asthma surveillance literature focuses on national-,
regional-, or state-based estimates of prevalence, health-care
utilization (specifically hospitalizations, emergency department, and
ambulatory care visits), and mortality. Although these are important
events, they reveal little about asthma's impact at the community
level and provide little information that could be used to design
specific interventions for improving clinical outcomes. A useful
representation of asthma care across a community could guide an
effective community response to the burden of asthma. The goal of the
Chicago Asthma Surveillance Initiative (CASI) is to develop a
community-wide surveillance program that characterizes and monitors
asthma care in the Chicago area, beyond existing public health
surveillance. To accomplish this, CASI surveyed Chicago-area hospitals,
emergency departments, primary care physicians, specialty care
physicians, pharmacists, managed care organizations, the general
public, and persons or families affected by asthma to learn about
asthma care and its outcomes. A variety of techniques (including
brochures, slide kits, and the Internet) were used to achieve
rapid public dissemination of study findings. The value of this
comprehensive community-based data surveillance effort will rest on how
the community uses this information to stimulate new efforts to improve
asthma care and reduce untoward
outcomes.
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Introduction
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Studies conducted by the National Center for Health
Statistics provide very important information about the number of
persons affected with asthma, about health-care utilization
(ie, physician office visits, emergency room visits,
hospitalizations), and about mortality. The National Center for Health
Statistics surveillance systems, which characterize the burden of
asthma at national, regional, and state levels, provide no insights
into the impact of asthma at the community level, and they do little to
elucidate the providers' perceptions of key aspects of asthma care.
Aside from these national surveillance surveys, there have been few
studies that have examined asthma care as delivered by selected groups
of health-care providers. For example, one U.S. study explored the
quality of asthma care in pediatric emergency departments and found
many elements of care were inconsistent with the National Asthma
Education and Prevention Program guidelines from the National
Institutes of Health for the diagnosis and treatment of asthma—with
considerable variation by hospital type.1
Another study of
physician care characterized the practice patterns of physicians in the
Minnesota Medicaid managed care network.2
This study found
that whereas practitioners had a high awareness of the guidelines,
their self-reported practice patterns were only in compliance with some
aspects of the guidelines. Unfortunately, studies such as these are far
too infrequent and incomplete to provide an accurate representation of
asthma care across the United States—or even across a single area.
Yet, increasingly, asthma is becoming recognized as a major public
health concern.3
4
Its social and economic consequences
are immense.5
There are now a number of studies that
suggest that the impact of asthma is not uniform across the United
States, but rather disproportionately affects some
communities.6
7
8
9
10
Respective of the substantive literature
characterizing the burden of asthma in various communities, there is
very little information on how communities are contending with this
problem.
The Chicago Asthma Surveillance Initiative (CASI) is a community-wide
surveillance program designed to characterize and monitor asthma care
in the Chicago area—an area previously recognized as having one of the
worst asthma mortality rates in the United States. As shown in Figure 1
, the initiative targets Cook County (including the City of Chicago) and
the five surrounding counties. This geographic area accounts for
approximately 7.3 million persons. Of this population, approximately
2.8 million persons reside in the city of Chicago, and of these, an
estimated 223,000 persons have asthma (Sandra Thomas, MD, MPH, Chicago
Board of Health; personal communication, June, 1999). The CASI
surveys were designed to assist the Chicago Asthma Consortium
(CAC)11
in setting program priorities and to evaluate the
impact of these programs over time.
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The CASI Surveys
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The purpose of CASI is to characterize asthma care practice
patterns across the various sectors of asthma care. To achieve this
goal, surveys were planned, developed, and administered to each of the
following groups: emergency departments (EDs), hospitals, primary care
physicians, asthma care specialists, managed care organizations, and
pharmacists. However, the study would present a one-sided and
incomplete picture of asthma care if it examined only the provider's
perspective. Therefore, the CASI team also developed and piloted a
survey to determine the general public's knowledge, attitudes, and
beliefs about asthma, and they are in the process of developing a
supplemental survey specifically for persons (or caregivers of persons)
with asthma.
Several common rules governed the development of all of the surveys.
First, the CASI team used items from existing instruments whenever
possible. They also tried to minimize the burden to the respondent by
keeping the total number of items to as few as possible. For each of
the surveys, the team involved representatives from the target
population in the development process, and they tried to minimize the
number of survey items that focused strictly on Chicago, thus making
the survey potentially useful in other communities. Although the
majority of the content varied from survey to survey, all of the
provider-based surveys included questions designed to elicit the
respondents' knowledge of the National Asthma Education and Prevention
Program guidelines as well as their awareness of the CAC. All of the
CASI surveys to date are based on respondent self-report rather than
actual observation or chart audit.
Table 1
presents the general content areas addressed by each of the CASI
surveys. The following is a brief overview of each of the surveys;
details on their development and results are presented elsewhere in
this journal supplement.
ED Survey
The ED survey12
was developed to both estimate
the frequency of asthma visits as well as explore the perceptions of ED
practice patterns for patients with asthma. The targeted respondents
were the medical directors of the EDs in the Chicago area. Written
questionnaires were mailed to 89 medical directors. Of these, 64
completed and returned the survey, for a response rate of 71.9%.
Hospital Survey
Data on the number of asthma hospitalization events in the Chicago
area are available from the Illinois Health Care Cost Containment
Council; therefore, unlike the ED survey, the hospital
survey13
was not developed to estimate the
frequency of hospitalizations for asthma. Rather, this survey focused
entirely on perception of hospital-based practice patterns for patients
with asthma. The respondents were individuals identified (by the
medical director) to be the most knowledgeable about issues of asthma
care for each hospital. Questionnaires were mailed to individuals at
all 89 hospitals in the Chicago area; 59 were returned, for a response
rate of 66.3%.
Managed Care Survey
The managed care survey14
was developed to
gain knowledge about organizational programs and activities related to
asthma care. For this survey, the targeted respondents were the medical
directors of the managed care organizations in the Chicago area.
Thirteen of the 19 eligible managed care organizations completed and
returned a questionnaire, for a response rate of 68.4%.
Primary Care Physician Survey
The primary care physician survey15
addressed
asthma care practice patterns among general pediatricians, general
medicine physicians, and family practice physicians. For this survey, a
self-administered questionnaire was mailed to a random sample of
approximately 10% of the 3,800 primary care physicians in the Chicago
area. Of the 405 eligible physicians, 244 returned surveys, for a
response rate of 60.2%.
Specialty Care Physician Survey
The specialist physician survey16
examined
practice patterns among asthma specialists (allergists or
pulmonologists) in the Chicago area. Surveys were mailed to a random
sample of approximately 50% of the asthma specialty care physicians in
the Chicago area. Surveys were received from 113 of the 157 eligible
physicians, for a response rate of 72.0%.
Pharmacist Survey
The last of the provider-based CASI surveys was sent to a random
sample of approximately 15% of the 1,221 "pharmacists in charge"
of pharmacies in the Chicago area. The analysis of the survey data is
currently in progress.
Asthma Survey of the General Population
The survey of the general population17
18
had
very different objectives than the surveys of health-care organizations
and providers. This survey was designed to address current perceptions,
knowledge, attitudes, and beliefs about asthma in the general
population. The survey was piloted via telephone to a sample of persons
in the Chicago area (random digit dial). Respondents were asked
questions about the stigma or acceptability of asthma, its symptoms,
seriousness, perceptions of quality of life, treatment, etc (Table 1)
.
In addition, several of the questions were designed to identify persons
with asthma. When, in the course of the survey, individuals with asthma
were identified, they were then asked to complete a supplemental
questionnaire covering such topic areas as medication use,
satisfaction with medical care, etc (Table 1)
.
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Dissemination of the CASI Survey Results
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One of the key goals of the CASI project is to assist the
CAC19
in setting program priorities. The CAC is a dynamic,
action-oriented organization requiring "real-time" feedback.
Dissemination of the CASI data through the traditional mechanisms of
scholarly peer-review is too slow to be of use to the public.
Therefore, the CASI team pursued other mechanisms for public
dissemination of the results, including local presentations at
educational seminars and CAC meetings and local distribution of
brochures highlighting some of the key findings (Fig 2
). Slide kits have also been created to further encourage dissemination
of the CASI survey results. These kits are available to anyone agreeing
to use them in a presentation within 12 months.
Perhaps the most interesting mechanism for public dissemination has
been the establishment of a CASI Internet site
(www.rpci.rush.edu/casi). The site is easily updated, providing
widespread access to current information—including downloadable copies
of the CASI brochures and survey instruments as well as the ability to
download the slide kits on-line. Since its launch, the site has logged
> 600 visits. Users have downloaded > 75 copies of the various
survey instruments and requested nearly 100 slide packs. To date,
approximately 28% of the visitors downloading CASI information have
been from the Chicago area, and > 70% have been from outside
Illinois.
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Discussion
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Community-based information about knowledge and management of
chronic illness is difficult to acquire. National surveys, such as
those conducted by National Center for Health Statistics, although
comprehensive, provide a limited amount of useful information at the
local level. Although the results of the National Health
Interview Survey and National Health and Nutrition Examination Survey
provide detailed information on individual health, this information is
obtained from a national sample of the U.S. population—making small
area estimates, even for communities as large as Chicago, difficult at
best. Also, these national surveys provide little information about the
level of community awareness or knowledge of chronic illnesses such as
asthma. Most national surveillance activities are aimed at compiling
information on key health-care utilization events or vital statistics
(ie, births and deaths). State-based surveillance systems
are even less predictable in their ability to provide community-based
information. Whereas many states collect information on vital
statistics and hospitalization events, few, if any, collect
community-based information related to chronic illnesses.
The CASI project provides a novel approach to acquiring a relatively
comprehensive, community-based understanding of the perception of
asthma in the health-care sectors and general population of the Chicago
area. The value in this data collection effort depends on whether or
not the community uses this information to stimulate new efforts to
improve asthma care and reduce untoward outcomes.
The first promising effect stemming from the CASI surveys has been the
creation of the Chicago Emergency Department Asthma
Collaborative.21 In December 1997, the CAC presented the
information from the CASI study at a meeting attended by
representatives of EDs in the Chicago area. The CASI data suggested
undesirable variations in many aspects of asthma care. As a result of
this meeting, 28 of the EDs agreed to participate in a 1-year
community-based collaborative aimed at improving ED asthma
care.20
The CAC is likely to use other CASI data
(hospital, managed care, and physician survey data) to stimulate
similar asthma quality improvement activities in other health-care
sectors.
As with most survey-based research, there are several distinct
limitations to the CASI information. All of the CASI data are based on
self-report. Therefore, other estimates of asthma care based on actual
observation or clinical audit would likely produce a different
assessment. However, the cost and feasibility of observational efforts
are likely to prohibit their use as a first-line approach to
community-based characterization of care. Further work in this area
needs to examine the validity and reliability of self-reported data as
compared with more objective types of assessments. Also, whereas the
CASI surveys sought to characterize asthma care as delivered by key
groups of providers, there were not enough resources to survey all
sectors relevant to the care of persons with asthma (eg,
nurses, school clinics, public health clinics, etc). Finally, the
findings cannot be generalized beyond the Chicago area unless other
communities develop or adopt similar surveys.
However, respective of these limitations, the CASI information is
unique and informative, particularly at the local level. It has the
potential to be particularly useful in identifying existing efforts in
asthma care quality improvement throughout the various sectors of
health-care delivery. It is also one of the few mechanisms for
evaluating the longitudinal effects of community-based asthma care
improvement initiatives.
The CAC has used the CASI survey data to help guide future marketing
decisions. For example, Figure 3
presents the proportion of CASI survey respondents reporting awareness
of the CAC. The CASI survey found that whereas all of the respondents
to the managed care survey were aware of the CAC, only 4.9% of the
respondents to the general public survey knew of it. In response, the
CAC is now in the process of designing a public awareness campaign.
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Conclusion
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CASI has provided a cross-sectional characterization of many
aspects of asthma care throughout the Chicago area. Yet, the methods
and instruments are not only useful for collecting baseline
information—they also have the potential to monitor changes in asthma
care. The next steps will be to repeat the surveys for certain targeted
populations to provide longitudinal surveillance data. The members of
the CASI project also plan to continue refining the Chicago Community
Asthma Survey17
and plan to move beyond pilot studies to
conduct a community-wide survey of asthma knowledge, attitudes, and
beliefs. Other goals include identifying new accessible and useful
methods for disseminating the findings. For all phases of this project,
it is hoped that the data provided by CASI will be used to promote the
improvement of asthma care and outcomes throughout the Chicago area and
might serve as a useful model for other cities.
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Appendix 1
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Other members of the CASI team include (in alphabetical order):
Claudia Baier, MPH, Steven Daugherty, PhD, Edward Eckenfels, Tao Li,
PhD, Christopher Lyttle, MA, Anita Malone, MPH, and Karen Turner-Roan,
MPH, of Rush-Presbyterian-St. Luke's Medical Center; and Michael
McDermott, MD, James Moy, MD, of Cook County Hospital, Chicago,
IL.
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Footnotes
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CASI is funded by a grant from the Otho S.A. Sprague Memorial
Institute.
Abbreviations:
CAC = Chicago Asthma Consortium; CASI = Chicago Asthma Surveillance
Initiative; ED = emergency department
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TOP
Abstract
Introduction
