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(Chest. 1999;116:178S-183S.)
© 1999 American College of Chest Physicians

Development of a Survey of Asthma Knowledge, Attitudes, and Perceptions*

The Chicago Community Asthma Survey

Evalyn N. Grant, MD; Karen Turner-Roan, MPH; Steven R. Daugherty, PhD; Tao Li, PhD; Edward Eckenfels; Claudia Baier, MPH; Michael F. McDermott, MD; Kevin B. Weiss, MD and for the Chicago Asthma Surveillance Initiative Project Team{dagger}

* From the Department of Immunology/Microbiology (Dr. Grant); the Center for Health Services Research (Drs. Daugherty and Li, and Ms. Turner-Roan), Rush Primary Care Institute; and the Department of Preventive Medicine (Mr. Eckenfels and Ms. Baier); Rush-Presbyterian-St. Luke's Medical Center; and the Department of Emergency Medicine (Dr. McDermott), Cook County Hospital, Chicago, IL. {dagger} See Appendix for other members of the CASI Project Team.

Correspondence to: Kevin B. Weiss, MD, Director, Center for Health Services Research, Rush Primary Care Institute, Rush-Presbyterian-St. Luke's Medical Center, 1653 W Congress Pkwy, Chicago, IL 60612


   Abstract
TOP
 Abstract
Introduction
 General Overview of Survey...
 Step 2: initial construction
 Step 2: assessment of...
 Discussion
 Appendix 1
 References
 
Little is known about the general public's perception of the diagnosis of asthma and the impact of asthma on individuals, their families, and their communities. In addition, there appear to be no published survey instruments specifically designed to gain insights into how the general public perceives asthma. The purpose of this paper is to describe the development of such an instrument, the Chicago Community Asthma Survey (CCAS)-32. Development began with two qualitative steps. First, a review of the published literature guided the initial instrument construction (Step 1). Content domains were chosen based on clinical input and the Health Belief Model. Most items were derived from existing instruments. To assess content validity, cognitive interviews and expert reviews were conducted (Step 2). Items were added, modified, and deleted based on the information gathered at each of these steps. In the next step, item performance measurement (Step 3), testing of two samples provided quantitative data to further inform item reduction. Items with uniform correct responses or responses lacking in variability were excluded. The result of this three-step process was a 32-item survey of asthma knowledge, attitudes and perceptions, the CCAS-32. The introduction to the survey was subsequently modified to minimize respondent bias (Step 4). In conclusion, the CCAS-32 was constructed with input from experts in asthma and individuals from the Chicago area. The items in the CCAS-32 appear to have both face validity and acceptable performance characteristics.


   Introduction
TOP
 Abstract
 Introduction
General Overview of Survey...
 Step 2: initial construction
 Step 2: assessment of...
 Discussion
 Appendix 1
 References
 
Recent trends in the social burden of asthma have become part of the debate about the health of the general public.1 2 3 4 However, there is very little information about the general public's perception of the diagnosis of asthma and its impact on individuals, their families, and their communities. If the public's knowledge about asthma is very good, national campaigns targeting asthma awareness, such as the National Asthma Education and Prevention Program,5 are likely to have little impact. If, on the other hand, the general public has some misconceptions about asthma and its impact, these misconceptions may need to be addressed if asthma outcomes are to be improved.

A number of survey instruments have been used to characterize knowledge, attitudes, and beliefs about asthma among persons with asthma.6 7 8 9 10 11 12 13 14 15 However, there appear to be no published survey instruments specifically designed to gain insights into the perception of the general public. The purpose of this paper is to describe the process used in the development of such an instrument, the Chicago Community Asthma Survey (CCAS-32).


   General Overview of Survey Development
TOP
 Abstract
 Introduction
 General Overview of Survey...
Step 2: initial construction
 Step 2: assessment of...
 Discussion
 Appendix 1
 References
 
The goal of this project was to develop a relatively brief, valid, easy-to-administer survey instrument that can be used to collect information via either telephone or face-to-face interviews. The survey would assess knowledge, attitudes, and beliefs about asthma and its management, and serve as an evaluative instrument to track changes in these attributes over time.

Figure 1 presents an overview of the survey development process. Development began with two qualitative steps. First, a review of the published literature guided the initial instrument construction (Step 1). Second, to assess content validity, cognitive interviews and expert reviews were conducted (Step 2). Items were added, modified, and deleted based on the information gathered at each of these steps. In the next step, item performance measurement (Step 3), testing of two samples provided quantitative data to further inform item reduction. The result of this three-step process was a 32-item survey of asthma knowledge, attitudes, and perceptions, the Chicago Community Asthma Survey (CCAS-32). Finally, the survey introduction was examined to see if modification would alter the responses to survey items (Step 4).



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  		Figure 1. Figure 1 . Process of instrument development, testing, and reduction for the Chicago Community Asthma Survey (CCAS-32).

 
This project was approved by the Institutional Review Board of Rush-Presbyterian-St. Luke's Medical Center.


   Step 2: INITIAL CONSTRUCTION
TOP
 Abstract
 Introduction
 General Overview of Survey...
 Step 2: initial construction
Step 2: assessment of...
 Discussion
 Appendix 1
 References
 
Step 1A: Assessment of Relevant Issues
As seen in Figure 1 , the survey development process began by identifying relevant content areas. This was accomplished by reviewing published literature in the area of asthma education and by gathering the advice of local practitioners who participate in asthma care. A working group comprised of representatives from clinical practice, public health, and survey research met periodically with the project staff to review the collected information. From this material, core issues in asthma care and beliefs about asthma were distilled and identified.

Step 1B: Content Selection
Using the information identified in Step 1A, the working group next developed an initial set of content domains summarizing the core issues related to asthma and its management. These content domains represented broad areas of concern and served as the underlying dimensions to be assessed by the general survey instrument.

In addition to the asthma content domains identified through clinical input, domains were also identified using the theoretical perspective offered by the Health Belief Model.16 The Health Belief Model maps out a series of conditions that make it more likely for an individual to take preventive health measures or adhere to a treatment prescription. The domains suggested by the Health Belief Model do not pertain to asthma exclusively, but delineate contributing factors that help predict a person's willingness to take action or change salient behaviors.

The clinical input, together with the Health Belief Model, produced a set of nine domains: (1) symptoms; (2) stigma/acceptability, (3) seriousness/severity; (4) perceptions of susceptibility; (5) consequences; (6) barriers to care; (7) perceptions of quality of life; (8) treatment/utilization of health care; and (9) triggers/environmental risk. This set of domains formed the conceptual structure used for the subsequent developmental steps.

Step 1C: Item Construction
Individual items were then derived to fit into the domains of the conceptual framework. Items were either borrowed from existing patient-focused measures4 6 11 12 13 17 or constructed de novo for those domains for which no relevant published items could be discovered.

Items were selected based on the following criteria: (1) comprehensiveness; (2) avoiding obvious redundancy; and (3) balance of domains represented. Once a sizeable pool of items was accumulated, the items were categorized as representing one or more domains. Initial item selection aimed to be as comprehensive as possible. The pool of items was then reduced through a series of reviews. When two items were deemed essentially redundant, one item was selected and the other excluded. Every effort was made to derive multiple items for each of the selected domains. To balance the survey, items were eliminated so that no one particular domain would predominate.

The working group used simple, commonly accepted rules for the construction and evaluation of items.18 These rules included selecting items that present a single issue, use everyday language, and are brief enough to administer orally. The result of this process was a pool of 58 survey items distributed across the nine basic domains. In addition, two items with content specific to the Chicago area were added.


   Step 2: ASSESSMENT OF CONTENT VALIDITY
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 Abstract
 Introduction
 General Overview of Survey...
 Step 2: initial construction
 Step 2: assessment of...
Discussion
 Appendix 1
 References
 
2A. Expert Panel Review
To assess the content validity of the survey items, a panel of 32 local, national, and international asthma experts was identified. This panel included clinicians who were members of the National Asthma Education and Prevention Program's expert panel5 or participated in the Global Initiative on Asthma.5

Local experts included faculty members, asthma case managers, and members of asthma-related quality improvement teams. This panel was instructed to review each item and rate it using a scale from 0 to 2, where 0 indicated that the item did not target an issue of importance, and 2 indicated that the item was very important to retain. The panel members were also asked to make qualitative comments regarding content or construction. Finally, the panel members were asked to indicate any issues that they thought were missing from the item pool.

For each item, the ratings from all panel members were combined to produce an average. Using these averages, the survey items in the pool were then rank-ordered. Those items with the lowest ratings became candidates for exclusion. The mean rating for the deleted items was 1.19; the mean for the retained items was 1.77. Examples of items added based on recommendations from the panel include "Some people have asthma and don't know it (T/F [true/false])" and "There is little a person can do to control their asthma (T/F)." Examples of deleted items include "Children with asthma have a hard time achieving their life goals (T/F)" (mean rating, 1.38), and "Children with asthma are less adventuresome than other children (T/F)" (mean rating, 1.07).

Step 2B: Cognitive Interviews
In order to gauge clarity and comprehensibility of the items, cognitive interviews were conducted with individuals from the Chicago community. A convenience sample of 83 individuals was recruited from diverse sites, including church groups, community colleges, local businesses, a long-term care facility, and a homeless shelter. Many of the persons (62.5%) in the sample had a high-school education or less. The interviewees were asked to complete a written, self-administered version of the 58-item survey, to flag any items that they found unclear or confusing, and to write comments about these items. The individuals in this test group were then asked to discuss what they thought each item meant to ensure that it was being read as intended. Examples of items deleted based on the cognitive interviews include "Many people can take care of their own asthma with the help of a doctor (T/F)" and "Most children with asthma come from poor homes (T/F)."

Based on information from the expert review and cognitive interviews, three new items were constructed, 26 items were retained without changes, 24 were modified, and nine items were deleted. This resulted in a new pool of 52 questions.

Step 3: Item Performance Measurement
This new pool of items became the survey for quantitative item performance measurement. Two samples were used for this phase of testing. First, data were obtained from the community-drawn convenience sample described above (n = 83). In addition to participating in the cognitive interviews, these individuals were also asked to complete self-administered surveys. A larger sample was also obtained via a random-digit dialing telephone survey of the Chicago area, using residential telephone numbers purchased from a commercial vendor (SDR Sampling Services; Atlanta, GA). For this telephone survey, a total of 222 respondents aged >= 18 years were interviewed.

The purpose of this step was to ensure that responses to the items in the final survey did not manifest floor and ceiling effects, and would manifest sufficient variation to allow differentiation across segments of the population. For these reasons, items to which the two samples provided uniform responses were candidates for exclusion. After examining the distribution of SDs for the responses, a numerical decision rule for exclusion was adopted. Likert scale items with SDs < 0.95 were deleted. For binary response items (true/false or yes/no), "don't know" responses were assigned a numerical value for calculation of a mean and SD. Items with an SD < 0.4 were deleted. Frequency distributions were also used to eliminate certain items based on the floor/ceiling of the responses. In general, items with responses > 80% at the highest or lowest values were deleted. In addition to deleting items based on uniform responses, several items were excluded because of extreme variability in the responses, suggesting unclear wording of the questions. Examples of the 22 items deleted as a result of this quantitative item performance measurement step are seen in Figure 2 .



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  		Figure 2. Figure 2 . Examples of item reduction based on quantitative item performance measurement (Steps IIIA and IIIB) during development of the Chicago Community Asthma Survey (CCAS-32).

 
Beyond the use of random telephone number selection, no attempt was made to have this initial pilot be representative of the region as a whole. For this phase of testing, each telephone number in the sample received no more than five attempts at contact before being discarded. This strategy was selected to maximize the number of respondents and minimize the effort to contact them. Data from this initial pilot are, therefore, useful for revealing the response properties of the survey items, but not to be considered an assessment of the distribution of attitudes in the community at large.

Final Survey
The development process described above resulted in a short survey for characterizing asthma knowledge, attitudes, and beliefs among adults in the general public.

The initial pool of 58 items was reduced to 32 by choosing to retain those items with the highest degree of content validity and other survey performance characteristics (appropriate variation and floor/ceiling distribution). These included 21 true/false items and 11 Likert-scale items. The initial testing of this instrument included both self-administered and interviewer-administered versions. The survey administration time was < 10 min.

Step 4. Testing of the Introduction
It is well known that the choice of words in an introduction to a survey can influence a person's willingness to participate. For the CCAS-32, it was hypothesized that introducing it as an "asthma survey" would attract a greater proportion of persons with asthma. Since the goal of the survey was to evaluate the perceptions of the general public, this type of respondent bias would be undesirable. Therefore, a second version of the survey introduction was created. In this version, the CCAS-32 was introduced as a survey about "health and health care."

In the first random-digit dial sample (same sample used in Step 3B, n = 222), the survey was introduced with the following text: "The purpose of this study is to find out how much people know about asthma." The introduction also included the question "Do you, yourself, have asthma?"

In a subsequent random-digit dialing telephone sample (n = 568), the survey introduction was modified slightly to read, "We're doing a survey of Chicago-area residents to find out your opinions about health and health care." This was followed by the question, "In general, would you say your health is excellent, very good, good, fair, or poor?" At the completion of the survey, the respondent was asked, "Does anyone in your family, including yourself, have asthma?" and "Is that person yourself or a family member?"

As shown in Table 1 , the "asthma introduction" was associated with higher rates of self-reported asthma than the "general health introduction" (14.9% vs 9.5%; p < 0.01). Because these two samples differed in terms of sociodemographic variables, odds ratios were calculated before and after adjusting for sex, age, race, and education. This analysis showed that even after adjustment, persons who received the "asthma introduction" were more likely to report having asthma than those who received the "general health introduction" (odds ratio [OR], 1.67; 95% confidence interval [CI], 1.02 to 2.72).


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  		Table 1. Effect of Survey Introduction on Self-Reported Asthma Among Chicago-Area Residents Age >= 18 Years

 

   Discussion
TOP
 Abstract
 Introduction
 General Overview of Survey...
 Step 2: initial construction
 Step 2: assessment of...
 Discussion
Appendix 1
 References
 
The process of survey development and testing has provided new insight regarding assessing the asthma knowledge of the general public. First, many items that are frequently included in other asthma knowledge surveys (targeted to persons with asthma) were eliminated during development of the CCAS-32 based on poor performance measurement (uniform correct responses, ie, floor/ceiling effects, or lack of variability). Examples include items such as "Tobacco smoke can make asthma worse" and "Asthma is mainly an emotional illness." Among the general public in the Chicago area, these items displayed uniformly high levels of correct responses.

Second, this survey development process also demonstrated how the choice of survey introduction might be associated with differences in willingness to respond, as seen in the proportion of respondents with self-reported asthma. The findings suggest that the "asthma introduction" may have been an important source of respondent bias, in that individuals with asthma might have been more likely to agree to be interviewed than unaffected individuals. The use of a "general health introduction" followed by an introductory question on general health may be associated with less bias toward recruiting patients with asthma. This introductory question on general health was chosen because it appeared to be nonthreatening, and concerns a topic of interest to most people.19

In recent years, alternative approaches to health system-based asthma education, such as public and community education campaigns, have been promoted.1 20 21 22 23 24 However, these programs were developed in the absence of information about the baseline levels of asthma knowledge and perceptions of the general public. In the future, programs may find surveys such as the CCAS-32 useful for obtaining baseline assessments, determining community needs, and evaluating program effectiveness.

Survey development is an iterative process, and the CCAS-32 will need to undergo some evolution and refinement before it can be promoted as a final product. While we believe that in its current form, the CCAS-32 is a useful community assessment tool, several limitations should be addressed. First, although a systematic process was used to identify items and content areas, it is possible that important content may have been missed. Also, the development work thus far has occurred in only one geographic area; item performance may differ in other communities.

If the CCAS-32 is to be used in other settings as an evaluative instrument, it would be important to further understand the instrument's discriminative validity, test-retest reliability and responsiveness, particularly among differing populations. It would also be interesting to examine how social and cultural factors may modify item performance. Users of the CCAS-32 should be aware that modifications to the instrument based on future scientific testing will be made available in a timely manner through the CASI Internet site (www.rpci.rush.edu/casi).

In conclusion, there is a need for valid and reliable measures to study the effects of educational programs. To date, there has been little focus on the asthma knowledge of the general public. With input from experts in asthma and feedback from individuals in the Chicago area, a community survey of general asthma knowledge has been developed, containing items that appear to have both face validity and acceptable performance characteristics. Respective of the limitations described above, we believe that this new instrument will contribute to our ability to assess asthma knowledge, attitudes, and beliefs in the general public.


   Appendix 1
TOP
 Abstract
 Introduction
 General Overview of Survey...
 Step 2: initial construction
 Step 2: assessment of...
 Discussion
 Appendix 1
References
 
Other members of the CASI team include (in alphabetical order): Christopher Lyttle, MS, and Anita Malone, MPH, of Rush-Presbyterian-St. Luke's Medical Center, Chicago, IL; and James Moy, MD, of Cook County Hospital, Chicago, IL.


   Acknowledgements
 
We would like to thank the following individuals for their work in data collection: Bob Sprengel, Mary Marre, Cynthia Ortega, Marilyn Bradshaw, Arline Wilson, and Nada Smith. We would also like to thank Ms. Julie Piorkowski for her research assistance in the early phases of this project and Ms. Robin Wagner for her assistance in manuscript preparation.


   Footnotes
 
CASI is funded by a grant from the Otho S.A. Sprague Memorial Institute.

Abbreviations: CASI = Chicago Asthma Surveillance Initiative; CCAS = Chicago Community Asthma Survey; CI = confidence interval; OR = odds ratio


   References
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 Abstract
 Introduction
 General Overview of Survey...
 Step 2: initial construction
 Step 2: assessment of...
 Discussion
 Appendix 1
 References
 

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