Highlights
- •CDC's ABLE scale is used to examine recent changes in attitudes of US adults toward PWE.
- •In 2013, 56% of adults agreed that PWE can do anything; 70% agreed that PWE can cope with daily life.
- •Yet, 60% believed that PWE cannot do some activities safely.
- •25% of adults agreed that they would be nervous around PWE.
- •12% of adults would avoid a person with epilepsy who has frequent seizures.
Abstract
Objectives
This study aimed to evaluate the validity and the reliability of two components of the Attitudes and Beliefs about Living with Epilepsy (ABLE) scale and to measure the magnitude of the public's attitudes and behaviors toward persons with epilepsy using U.S. nationally representative samples in 2005 and 2013.
Methods
We used data from the cross-sectional 2005 SummerStyles and 2013 FallStyles surveys to test the underlying structure of 16 items of the work and role expectations and personal fear and social avoidance subscales of ABLE by performing exploratory factor analysis (EFA). We estimated the percentages and 95% confidence intervals of adults who agreed or disagreed with each item. We also calculated the mean score of each subscale and used linear regression to obtain means adjusted for selected sociodemographic characteristics.
Results
Exploratory factor analysis confirmed a two-factor structure, but with the exception of omitting one item regarding work activities persons with epilepsy cannot do work activities safely, from one subscale. Both subscales also showed a high level of reliability (Cronbach's α = 0.8 and Cronbach's α = 0.9, respectively). Among the items in the work and role expectations subscale, a significantly higher percentage of adults in 2013 than in 2005 reported strongly or moderately agreeing that persons with epilepsy can do anything as well as anyone else (56.4%, 95% CI = 54.1–58.7 vs. 47.6%, 95% CI = 45.8–49.3) and can cope with everyday life (69.8%, 95% CI = 67.5–72.0 vs. 55.0%, 95% CI = 53.2–56.7). Among the items in the personal fear and social avoidance subscale, a significantly higher percentage of adults reported in 2013 than in 2005 strongly or moderately agreeing that they would be nervous around persons with epilepsy (25.4%, 95% CI = 23.4–27.5 vs. 16.8%, 95% CI = 15.4–18.2) and would avoid those with frequent seizures (12.4%, 95% CI = 11.0–13.9 vs. 7.6%, 95% CI = 6.7–8.7). The adjusted mean score for work and role expectations differed by sex, age, race/ethnicity, education, and income in both years. The adjusted mean score for personal fear and social avoidance differed by sex, age, race/ethnicity, education, and marital status. Negative attitudes were slightly but significantly higher in 2013 than in 2005.
Conclusions
Centers for Disease Control and Prevention's ABLE scale is a valid and reliable scale that can be used to study and to track the public's attitudes and behaviors toward persons with epilepsy. Compared with 2005, US adults' reported level of expectations for persons with epilepsy improved only in certain aspects by 2013. Adults' level of personal fear and intention for social avoidance worsened from 2005 to 2013. Because the levels of expectations and of fear and social avoidance differed by sociodemographic characteristics, continued efforts tailored to specific groups are needed. To supplement educational programs focused on improving knowledge, new communication approaches grounded in decision theory that quell risk perceptions and allay negative emotional responses are recommended.
Keywords
1. Introduction
Epilepsy is one of the most common neurological disorders in the United States [
1
, 2
], with an estimated 2.9 million people having active epilepsy [3
, 4
]. While individuals may vary, as a whole, people with epilepsy (PWE) are at a high risk of cognitive impairment, functional limitations or disabilities, and comorbidities [5
, 6
]. Epilepsy-related stigma adds to psychological distress, deflated self-esteem and self-efficacy, reduced quality of life, and negative social and interpersonal experiences [2
, 7
, 8
, 9
, 10
, 11
, 12
]. Despite some progress over the past 50 years to ban discriminatory practices and to rectify myths and misperceptions about epilepsy, stigma still persists. The Institute of Medicine recommends improving the public's awareness and implementing education efforts to reduce epilepsy-related stigma [[13]
].Contemporary views on health-related stigma refer to perceived, enacted, or anticipated avoidance or social exclusion beyond a perceived individual blemish or mark [
14
, 15
, 16
]. The magnitude of stigma associated with epilepsy is often no less than that for infectious diseases such as AIDS and greater than that for other chronic diseases such as diabetes [[17]
]. People with epilepsy can feel the effect of stigma at individual, interpersonal, and institutional levels [18
, 19
]. On an individual level, PWE might “feel” embarrassment following a seizure in public that startles or panics others [[18]
]. On an interpersonal level, people with epilepsy might encounter exclusionary actions, attributing such challenges to their disorder [19
, 20
]. Widely known historical restrictions on insurance eligibility, marriage, adoption, and many occupations and recreational opportunities marginalized people with epilepsy, contributing to institutional stigma and limitations in daily life activities. Current driving restrictions imposed on people with epilepsy contribute to a sense of marginalization. People with epilepsy are also more likely to live in households with lower income levels, be unemployed, or be unable to work [[21]
]. Between one-third to one-half of PWE have depression [[22]
], and about 22% are smokers [[23]
]. Epilepsy stigma is compounded by these additional factors that may further marginalize them from full participation in daily activities. Those who are younger [[24]
], have less education [[25]
] or lower socioeconomic status [- Bruno E.
- Bartoloni A.
- Sofia V.
- Rafael F.
- Magnelli D.
- Padilla S.
- et al.
Epilepsy-associated stigma in Bolivia: a community‐based study among the Guarani population: an International League Against Epilepsy/International Bureau for Epilepsy/World Health Organization Global Campaign against Epilepsy regional project.
Epilepsy Behav. 2012; 25: 131-136
[26]
], are unemployed [27
, 28
, 29
], or have depression or anxiety disorders [30
, 31
] are at a higher risk of perceived stigma. Seizure frequency and seizure type also affect the degree of felt stigma [25
, - Bruno E.
- Bartoloni A.
- Sofia V.
- Rafael F.
- Magnelli D.
- Padilla S.
- et al.
Epilepsy-associated stigma in Bolivia: a community‐based study among the Guarani population: an International League Against Epilepsy/International Bureau for Epilepsy/World Health Organization Global Campaign against Epilepsy regional project.
Epilepsy Behav. 2012; 25: 131-136
32
].A long-standing priority of the Centers for Disease Control and Prevention's (CDC) Epilepsy Program is to improve public awareness about epilepsy and combat epilepsy stigma [
[33]
]. Over the past 15 years, CDC has partnered with organizations such as the Epilepsy Foundation to support yearly campaigns and education and awareness programs to promote social inclusion and to foster empowerment for PWE [[34]
]. These efforts have resulted in improved knowledge and awareness about epilepsy in some subgroups [[34]
]. However, no population-based studies have been conducted systematically to evaluate changes in public attitudes since these educational efforts have been implemented. To address the gap in population-based studies of epilepsy stigma in the United States, CDC developed the Attitudes and Beliefs about Living with Epilepsy (ABLE) scale to measure the public's attitudes and beliefs about epilepsy [33
, 35
]. It consists of four validated subscales: negative stereotypes, risk and safety concerns, work and role expectations, and personal fear and social avoidance [[35]
]. The objectives of our study were as follows: 1) to examine the validity and reliability of two ABLE subscales (work and role expectations and personal fear and social avoidance) in two nationally representative samples; 2) to examine differences in the US public's attitudes and beliefs toward epilepsy between 2005 and 2013; and 3) to identify the sociodemographic factors associated with stigma.2. Methods
2.1 Data
The data used in our study came from Porter Novelli's 2005 Styles (SummerStyles) [
[36]
] and the fall wave of 2013 Styles (FallStyles) [[37]
] databases. The Styles database was built to gain insights about American consumers on experiences and attitudes and behaviors toward various health topics such as tick-borne illness [[38]
], immunization [[39]
], breastfeeding [[40]
], mental illness [[41]
], and epilepsy [[42]
]. Survey participation was voluntary, and those who completed it received reward points worth approximately $5 and were entered into a monthly sweepstakes.Consistent with prior years, the 2005 SummerStyles was conducted through a series of mail panel surveys [
[43]
]. In May 2005, SpringStyles surveys were sent to 20,000 US adults 18 years of age and above from Synovate's consumer mail panel list based on stratified random sampling. A total of 12,639 (63%) of these adults completed the survey. These respondents were then divided into two equally balanced groups based on their demographic characteristics such as region, household income, household size, age, and population density in preparation for the SummerStyles survey. Starting in late June 2005, 6168 respondents from half of the SpringStyles received the summer survey in the mail, and 78% (n = 4819) of them completed and returned it. Our 2005 analysis sample contains these 4819 respondents from this SummerStyles survey who provided complete answers to questions about people with epilepsy as well as about their sociodemographic characteristics.Since 2011, Porter Novelli has changed their methodology for conducting surveys. In 2013, the Styles database was built from a series of web-based surveys [
[44]
]. Households without a computer were provided with a laptop and Internet access if they were selected for participation. During the spring wave, 11,188 adults 18 years of age and older from GFK's Knowledge Panel were initially randomly selected for the survey, and 6717 (60%) completed it. Among them, a random sample of 4420 respondents was further selected for the FallStyles survey, and 79% of them completed it. Our 2013 analysis sample includes the 3502 respondents who answered the same set of questions asked in 2005 about people with epilepsy and who provided complete information about their sociodemographic characteristics.The 2005 SummerStyles used a random stratified sampling (by region, household income, population density, age, and household size) to produce nationally representative estimates, whereas the 2013 FallStyles used a random sample to match the US population. In both survey years, the resulting data were weighted to by sex, age, household income, race/ethnicity, and household size [
43
, 44
]. These consumer panel surveys have been found to produce comparable national prevalence estimates of certain health conditions (e.g., diabetes) and outcomes (e.g., health-related quality of life) with those from other surveillance data such as those from the Behavioral Risk Factor Surveillance System and National Health Interview Survey [45
, 46
, 47
]. CDC licensed the results of the 2005 SummerStyles and 2013 FallStyles survey postcollection from Porter Novelli, and analysis of these data was exempt from institutional review board approval because personal identifiers were not included in the data file.2.2 Measures
2.2.1 Attitudes and Beliefs about Living with Epilepsy (ABLE) subscales
The ABLE scale was developed and validated to examine stigma in the general public associated with epilepsy [
33
, 35
]. This scale contains four subscales that measure different stigma domains: negative stereotypes, risk and safety concerns, work and role expectations, and personal fear and social avoidance [[35]
]. Our study sought to extend previous validation studies [[35]
] by examining the validity and the reliability of work and role expectations, and personal fear and social avoidance subscales in new study samples. Each item (see Appendix A) is scored on a five-point Likert scale ranging from strongly disagree to strongly agree.2.2.2 Covariates
We included several sociodemographic covariates to examine and to adjust for group differences. These covariates included sex (male or female), age (18–34, 35–54, 55–64, or 65 and above), race/ethnicity (White, Black, Hispanic, or other race), education (high school or less, some college, or college or more), employment status
1
(working, self-employed, temporarily unemployed, retired, disabled, or other), family income ($24,999 or below, $25,000–$59,000 or $60,000 and above), and marital status (never married, widowed/divorced/ separated, or married).A substantial difference in the response categories for questions primarily related to employment status occurred between 2005 and 2013. The employment question in 2013 did not make a distinction between working part-time and working full-time as it did in 2005. In 2005, those who were disabled, students, and others who were not employed were combined into one single category value, whereas the 2013 survey separated those disabled from the other groups. The 2005 question also has a separate category for full-time homemakers, whereas the 2013 question did not.
2.2.3 Study aims and hypotheses
The first aim of the analysis was to evaluate the validity and reliability of the underlying structure of two subscales: work and role expectations and personal fear and social avoidance. The second aim was to assess the level of reported agreement for each item in each subscale. The third aim was to replicate construct validity of the subscales by examining differences in scores by sociodemographic characteristics. We hypothesized that the 16 items would load onto two factors, the scales would demonstrate acceptable validity and reliability, and the factor scores would vary by sex, age, race/ethnicity, and education, consistent with previous findings [
[35]
].2.3 Analysis
We calculated descriptive statistics for each of the two samples and for each item of each subscale to examine their underlying distributions (Table 1). We performed exploratory factor analysis (EFA) in SAS to examine the construct validity and the internal consistency of the 16 items from the two ABLE subscales. Because the response category for each item is ordinal, we conducted EFA on the polychoric correlation matrix. Previous simulation studies showed that EFA using the polychoric correlation matrix tends to produce more reliable results and yields a better fit to the theoretical model when the items have few response categories and their distributions are asymmetric or skewed [
48
, 49
]. Specifically, for EFA, we used the principal axis factoring extraction method and Varimax factor rotation to examine the underlying factor structure of these items [[50]
]. We examined the adequacy and goodness of fit of EFA using results from the Kaiser–Meyer–Olin (KMO) test, the anti-image correlation matrix, and standardized residuals [[50]
]. To determine the number of factors extracted from the 16 items, we evaluated their conformity to the Kaiser–Guttman rule (eigenvalues of 1.00 or higher), the percentage of variance explained, and the scree plot, and presented separately the results of the factor loadings for items in both subscales for the 2005 (Table 2) and 2013 samples (Table 3). Because results from an EFA on a weighted polychoric correlation matrix were very similar to those from the unweighted polychoric matrix, we present only results from the latter. To further test the validity of the two subscales, we also evaluated the performance of the EFA on different subsamples (results not shown). Within each year, we split the total sample into two random subsamples, by sex (women or men), by age group (18–34 years old, 35–54 years old, or 55 and above), and by race (White or non-White). Additionally, we calculated Cronbach's alpha to examine the internal consistency of each subscale and reported the polychoric correlation coefficients for work and role expectation (Table 4) and for fear and social avoidance (Table 5).Table 1Sociodemographic characteristics of the study samples, 2005 SummerStyles (n = 4,819) and 2013 FallStyles (n = 3,502).
| Sociodemographic characteristics | 2005 | 2013 | ||
|---|---|---|---|---|
| Sample size | Weighted % (95% CI) | Sample size | Weighted % (95% CI) | |
| Total | 4819 | 100% | 3502 | 100% |
| Sex | ||||
| Male | 2163 | 48.3 (46.5–50.1) | 1762 | 47.7 (45.4–50.1) |
| Female | 2656 | 51.7 (49.9–53.5) | 1740 | 52.3 (50.0–54.6) |
| Age | ||||
| 18–34 | 884 | 31.3 (29.4–33.3) | 686 | 29.2 (26.9–31.4) |
| 35–54 | 2548 | 39.6 (38.0–41.2) | 1156 | 35.5 (33.3–37.7) |
| 55–64 | 684 | 12.9 (11.9–13.9) | 778 | 16.7 (15.1–18.3) |
| 65+ | 703 | 16.2 (15.0–17.4) | 882 | 18.7 (17.1–20.3) |
| Race/ethnicity | ||||
| White, non-Hispanic | 3261 | 70.5 (68.9–72.1) | 2694 | 67.1 (64.8–69.4) |
| Black, non-Hispanic | 609 | 11.5 (10.4–12.6) | 312 | 11.3 (9.7–13.0) |
| Hispanic | 644 | 12.2 (11.1–13.3) | 304 | 14.0 (12.1–15.8) |
| Other, non-Hispanic | 305 | 5.8 (5.0–6.6) | 192 | 7.6 (6.1–9.1) |
| Education | ||||
| ≤High school | 1510 | 31.0 (29.4–32.5) | 1247 | 41.3 (39.0–43.6) |
| Some college | 1672 | 36.7 (35.0–38.4) | 1127 | 29.2 (27.2–31.2) |
| College or more | 1464 | 32.3 (30.7–33.9) | 1128 | 29.5 (27.5–31.6) |
| Employment status | ||||
| Working | 2803 | 60.9 (59.2–62.6) | 1637 | 48.1 (45.8–50.4) |
| Self-employed | 368 | 7.3 (6.4–8.3) | 253 | 6.9 (5.7–8.0) |
| Temporarily unemployed | 154 | 2.9 (2.4–3.5) | 233 | 8.4 (7.1–9.8) |
| Retired | 678 | 14.8 (13.7–16.0) | 906 | 20.1 (18.4–21.8) |
| Disabled | 277 | 5.5 (4.6–6.4) | 213 | 6.0 (4.9–7.0) |
| Other | 518 | 8.6 (7.7–9.4) | 260 | 10.6 (8.9–12.2) |
| Income | ||||
| $0–$24,999 | 1314 | 27.7 (26.0–29.4) | 569 | 18.4 (16.5–20.3) |
| $25,000–$59,999 | 1590 | 36.4 (34.7–38.1) | 1238 | 32.0 (29.9–34.0) |
| $60,000 or more | 1915 | 35.9 (34.3–37.5) | 1695 | 49.6 (47.3–51.9) |
| Marital status | ||||
| Married | 3424 | 59.9 (58.0–61.8) | 2259 | 62.5 (60.3–64.8) |
| Widowed/divorced/separated | 703 | 16.8 (15.5–18.1) | 564 | 14.6 (13.0–16.2) |
| Never married | 648 | 23.4 (21.5–25.2) | 679 | 22.9 (20.9–25.0) |
Abbreviation: n, sample size; 95% CI, 95% confidence interval for weighted percentage.
Table 2Explanatory factor analysis and factor loadings for two-factor solutions of epilepsy attitude items — SummerStyles 2005.
| Item | Factor loading | |
|---|---|---|
| Fear and social avoidance | Work and role expectations | |
| I believe that people with epilepsy can do anything I can do. | 0.138 | 0.635 |
| I believe that people with epilepsy are able to cope with everyday life. | 0.149 | 0.716 |
| I believe that people with epilepsy cannot have as good a quality of life. | 0.465 | 0.419 |
| I believe that people with epilepsy can be as successful at work as others. | 0.343 | 0.716 |
| I believe that people with epilepsy can work 40 h per week. | 0.207 | 0.799 |
| I expect as much from people with epilepsy as from others. | 0.149 | 0.746 |
| I believe that people with epilepsy can lead normal lives. | 0.356 | 0.719 |
| I would be nervous around a person with epilepsy because they might have a seizure. | 0.699 | 0.134 |
| I would not date a person with epilepsy. | 0.736 | 0.237 |
| I would not want my child to date a person with epilepsy. | 0.791 | 0.237 |
| I would be uncomfortable being around a person with epilepsy. | 0.818 | 0.249 |
| I would not want to work with someone who had epilepsy. | 0.805 | 0.325 |
| I would be afraid to be alone with someone with epilepsy. | 0.783 | 0.198 |
| I would avoid a person with epilepsy who has frequent seizures. | 0.714 | 0.159 |
| I would be embarrassed if someone in the family had epilepsy. | 0.617 | 0.192 |
Note. Values in boldface reflect items loaded on one factor.
Table 3Explanatory factor analysis and factor loadings for two-factor solutions of epilepsy attitude items — FallStyles 2013.
| Item | Factor loading | |
|---|---|---|
| Fear and social avoidance | Work and role expectations | |
| I believe that people with epilepsy can do anything I can do. | 0.223 | 0.658 |
| I believe that people with epilepsy are able to cope with everyday life. | 0.243 | 0.771 |
| I believe that people with epilepsy cannot have as good a quality of life. | 0.464 | 0.438 |
| I believe that people with epilepsy can be as successful at work as others. | 0.325 | 0.769 |
| I believe that people with epilepsy can work 40 h per week. | 0.212 | 0.730 |
| I expect as much from people with epilepsy as from others. | 0.177 | 0.660 |
| I believe that people with epilepsy can lead normal lives. | 0.320 | 0.762 |
| I would be nervous around a person with epilepsy because they might have a seizure. | 0.740 | 0.173 |
| I would not date a person with epilepsy. | 0.721 | 0.258 |
| I would not want my child to date a person with epilepsy. | 0.741 | 0.248 |
| I would be uncomfortable being around a person with epilepsy. | 0.764 | 0.258 |
| I would not want to work with someone who had epilepsy. | 0.733 | 0.390 |
| I would be afraid to be alone with someone with epilepsy. | 0.744 | 0.247 |
| I would avoid a person with epilepsy who has frequent seizures. | 0.778 | 0.197 |
| I would be embarrassed if someone in the family had epilepsy. | 0.622 | 0.366 |
Note. Values in boldface reflect items loaded on one factor.
Table 4Factor 1: polychoric correlation coefficients for work and role expectations subscale, 2005 SummerStyles and 2013 FallStyles.
| 1 | 2 | 3 | 4 | 5 | 6 | 7 | |
|---|---|---|---|---|---|---|---|
| 1. I believe that people with epilepsy can do anything I can do. | |||||||
| 2005 | 1.000 | ||||||
| 2013 | 1.000 | ||||||
| 2. I believe that people with epilepsy are able to cope with everyday life. | |||||||
| 2005 | 0.593 | 1.000 | |||||
| 2013 | 0.557 | 1.000 | |||||
| 3. I believe that people with epilepsy cannot have as good a quality of life. | |||||||
| 2005 | 0.361 | 0.387 | 1.000 | ||||
| 2013 | 0.392 | 0.458 | 1.000 | ||||
| 4. I believe that people with epilepsy can be as successful at work as others. | |||||||
| 2005 | 0.459 | 0.524 | 0.465 | 1.000 | |||
| 2013 | 0.581 | 0.665 | 0.489 | 1.000 | |||
| 5. I believe that people with epilepsy can work 40 h per week. | |||||||
| 2005 | 0.488 | 0.590 | 0.398 | 0.669 | 1.000 | ||
| 2013 | 0.509 | 0.635 | 0.404 | 0.645 | 1.000 | ||
| 6. I expect as much from people with epilepsy as from others. | |||||||
| 2005 | 0.494 | 0.533 | 0.340 | 0.595 | 0.697 | 1.000 | |
| 2013 | 0.508 | 0.553 | 0.354 | 0.556 | 0.578 | 1.000 | |
| 7. I believe that people with epilepsy can lead normal lives. | |||||||
| 2005 | 0.470 | 0.563 | 0.487 | 0.694 | 0.666 | 0.572 | 1.000 |
| 2013 | 0.600 | 0.699 | 0.498 | 0.696 | 0.603 | 0.543 | 1.000 |
Note. Cronbach's α = 0.844 (2005) and 0.848 (2013).
Table 5Factor 2: polychoric correlation coefficients for fear and social avoidance subscale, 2005 SummerStyles and 2013 FallStyles.
| 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | |
|---|---|---|---|---|---|---|---|---|
| 1. I would be nervous around a person with epilepsy because they might have a seizure. | ||||||||
| 2005 | 1.000 | |||||||
| 2013 | 1.000 | |||||||
| 2. I would not date a person with epilepsy. | ||||||||
| 2005 | 0.527 | 1.000 | ||||||
| 2013 | 0.541 | 1.000 | ||||||
| 3. I would not want my child to date a person with epilepsy. | ||||||||
| 2005 | 0.541 | 0.753 | 1.000 | |||||
| 2013 | 0.538 | 0.742 | 1.000 | |||||
| 4. I would be uncomfortable being around a person with epilepsy. | ||||||||
| 2005 | 0.631 | 0.641 | 0.695 | 1.000 | ||||
| 2013 | 0.662 | 0.588 | 0.593 | 1.000 | ||||
| 5. I would not want to work with someone who had epilepsy. | ||||||||
| 2005 | 0.580 | 0.674 | 0.739 | 0.778 | 1.000 | |||
| 2013 | 0.588 | 0.625 | 0.647 | 0.678 | 1.000 | |||
| 6. I would be afraid to be alone with someone with epilepsy. | ||||||||
| 2005 | 0.663 | 0.641 | 0.662 | 0.733 | 0.700 | 1.000 | ||
| 2013 | 0.702 | 0.553 | 0.543 | 0.682 | 0.638 | 1.000 | ||
| 7. I would avoid a person with epilepsy who has frequent seizures. | ||||||||
| 2005 | 0.535 | 0.521 | 0.557 | 0.607 | 0.601 | 0.541 | 1.000 | |
| 2013 | 0.609 | 0.624 | 0.631 | 0.639 | 0.653 | 0.624 | 1.000 | |
| 8. I would be embarrassed if someone in the family had epilepsy. | ||||||||
| 2005 | 0.421 | 0.443 | 0.492 | 0.527 | 0.548 | 0.450 | 0.607 | 1.000 |
| 2013 | 0.463 | 0.505 | 0.545 | 0.595 | 0.649 | 0.535 | 0.578 | 1.000 |
Note. Cronbach's α = 0.890 (2005) and 0.891 (2013).
We performed item level analysis and reported the weighted percentage of respondents who strongly/moderately agreed, neither agreed nor disagreed, or moderately/strongly disagreed with each item in both subscales (Table 6). We calculated the mean (summed) score for each subscale. We used least-squares regression weighted by the respondent sampling weights (WLS) to obtain predicted marginal means and their 95% confidence intervals, adjusted for all other sociodemographic covariates (Table 7). Because not all original items were worded in the same direction, we reverse-coded some of them before performing the WLS regression, so that a higher mean score reflected more negative attitudes. In all these analyses, we applied the respondents' sampling weights. We used non-overlapping 95% confidence intervals of adjusted percentages to identify statistically significant differences across subgroups (comparable with a statistical significance level of 0.007) [
[51]
]. To assess the precision of all the estimates, we also calculated their relative standard errors (RSE) and found all the estimates to be relatively precise (RSE < 30%).Table 6Percentage of agreement with attitudes about epilepsy — 2005 SummerStyles and 2013 FallStyles.
| Item | Overall n | % Missing | Strongly or moderately disagree | Neither disagree nor agree | Strongly or moderately agree | |||
|---|---|---|---|---|---|---|---|---|
| n | Weighted % (CI) | n | Weighted % (CI) | n | Weighted % (CI) | |||
| Work and role expectations | ||||||||
| I believe that people with epilepsy can do anything I can do. | ||||||||
| 2005 | 4734 | 1.8 | 1008 | 22.2 (20.8–23.8) | 1426 | 30.2 (28.6–31.9) | 2300 | 47.6 (45.8–49.3) |
| 2013 | 3477 | 0.7 | 576 | 16.3 (14.6–18.0) | 848 | 27.4 (25.3–29.6) | 2053 | 56.4 (54.1–58.7) |
| I believe that people with epilepsy are able to cope with everyday life. | ||||||||
| 2005 | 4714 | 2.2 | 518 | 10.7 (9.6–11.8) | 1594 | 34.4 (32.7–36.1) | 2602 | 55.0 (53.2–56.7) |
| 2013 | 3476 | 0.7 | 224 | 6.7 (5.6–8.0) | 732 | 23.5 (21.5–25.7) | 2520 | 69.8 (67.5–72.0) |
| I believe that people with epilepsy cannot have as good a quality of life. | ||||||||
| 2005 | 4730 | 1.8 | 3336 | 69.3 (67.6–71.0) | 962 | 21.3 (19.9–22.9) | 432 | 9.4 (8.3–10.5) |
| 2013 | 3480 | 0.6 | 2286 | 62.5 (60.2–64.7) | 791 | 25.7 (23.6–27.9) | 403 | 11.8 (10.4–13.4) |
| I believe that people with epilepsy can be as successful at work as others. | ||||||||
| 2005 | 4724 | 2.0 | 297 | 6.4 (5.5–7.4) | 842 | 18.2 (16.8–19.6) | 3585 | 75.5 (73.9–77.0) |
| 2013 | 3485 | 0.5 | 196 | 5.9 (4.9–7.2) | 594 | 19.9 (17.9–22.0) | 2695 | 74.2 (72.0–76.3) |
| I believe that people with epilepsy can work 40 h per week. | ||||||||
| 2005 | 4726 | 1.9 | 443 | 9.3 (8.3–10.4) | 1378 | 29.1 (27.5–30.7) | 2905 | 61.6 (59.9–63.3) |
| 2013 | 3474 | 0.8 | 292 | 9.9 (8.5–11.6) | 1013 | 32.0 (29.9–34.3) | 2169 | 58.1 (55.7–60.4) |
| I believe that there are work activities people with epilepsy cannot do safely. | ||||||||
| 2005 | 4685 | 2.8 | 754 | 16.0 (14.8–17.4) | 1510 | 31.4 (29.8–33.0) | 2421 | 52.6 (50.8–54.4) |
| 2013 | 3482 | 0.6 | 428 | 11.3 (10.0–12.8) | 955 | 29.2 (27.1–31.4) | 2099 | 59.5 (57.1–61.7) |
| I expect as much from people with epilepsy as from others. | ||||||||
| 2005 | 4727 | 1.9 | 736 | 15.3 (14.1–16.6) | 1552 | 33.2 (31.5–34.9) | 2439 | 51.5 (49.7–53.3) |
| 2013 | 3473 | 0.8 | 567 | 17.0 (15.3–18.8) | 1114 | 33.7 (31.5–36.0) | 1792 | 49.3 (47.0–51.6) |
| I believe that people with epilepsy can lead normal lives. | ||||||||
| 2005 | 4710 | 2.3 | 201 | 4.1 (3.5–4.9) | 893 | 19.8 (18.4–21.4) | 3616 | 76.0 (74.4–77.6) |
| 2013 | 3475 | 0.8 | 214 | 6.5 (5.4–7.8) | 597 | 19.6 (17.8–21.7) | 2664 | 73.9 (71.7–76.0) |
| Fear and social avoidance | ||||||||
| I would be nervous around a person with epilepsy because they might have a seizure. | ||||||||
| 2005 | 4720 | 2.1 | 2690 | 55.2 (53.4–57.0) | 1286 | 28.0 (26.4–29.7) | 744 | 16.8 (15.4–18.2) |
| 2013 | 3474 | 0.8 | 1765 | 46.8 (44.5–49.1) | 893 | 27.8 (25.7–30.0) | 816 | 25.4 (23.4–27.5) |
| I would not date a person with epilepsy. | ||||||||
| 2005 | 4643 | 3.7 | 2680 | 57.0 (55.2–58.7) | 1426 | 30.6 (29.0–32.3) | 537 | 12.4 (11.2–13.8) |
| 2013 | 3473 | 0.8 | 1665 | 47.0 (44.7–49.3) | 1363 | 39.9 (37.6–42.2) | 445 | 13.2 (11.7–14.8) |
| I would not want my child to date a person with epilepsy. | ||||||||
| 2005 | 4683 | 2.8 | 2948 | 62.4 (60.7–64.1) | 1347 | 28.8 (27.3–30.5) | 388 | 8.7 (7.7–9.9) |
| 2013 | 3480 | 0.6 | 1840 | 52.9 (50.6–55.2) | 1278 | 37.1 (34.9–39.4) | 362 | 10.0 (8.7–11.4) |
| I would be uncomfortable being around a person with epilepsy. | ||||||||
| 2005 | 4687 | 2.7 | 3263 | 68.8 (67.1–70.5) | 1023 | 22.1 (20.6–23.6) | 401 | 9.1 (8.1–10.3) |
| 2013 | 3475 | 0.8 | 2289 | 63.3 (61.0–65.5) | 823 | 25.5 (23.4–27.6) | 363 | 11.2 (9.8–12.8) |
| I would not want to work with someone who had epilepsy. | ||||||||
| 2005 | 4686 | 2.8 | 3521 | 74.0 (72.4–75.6) | 939 | 20.4 (19.0–21.9) | 226 | 5.6 (4.6–6.7) |
| 2013 | 3479 | 0.7 | 2494 | 69.2 (67.0–71.4) | 815 | 25.0 (23.0–27.1) | 170 | 5.8 (4.7–7.1) |
| I would be afraid to be alone with someone with epilepsy. | ||||||||
| 2005 | 4705 | 2.4 | 3104 | 64.9 (63.2–66.7) | 1088 | 23.4 (21.9–24.9) | 513 | 11.7 (10.4–13.0) |
| 2013 | 3476 | 0.7 | 2172 | 59.3 (57.0–61.5) | 836 | 27.2 (25.1–29.4) | 468 | 13.6 (12.1–15.2) |
| I would avoid a person with epilepsy who has frequent seizures. | ||||||||
| 2005 | 4727 | 1.9 | 3673 | 76.0 (74.4–77.6) | 734 | 16.3 (15.0–17.7) | 320 | 7.6 (6.7–8.7) |
| 2013 | 3475 | 0.8 | 1987 | 56.2 (53.9–58.5) | 1035 | 31.4 (29.3–33.6) | 453 | 12.4 (11.0–13.9) |
| I would be embarrassed if someone in the family had epilepsy. | ||||||||
| 2005 | 4755 | 1.3 | 4073 | 85.0 (83.6–86.3) | 442 | 9.7 (8.7–10.8) | 240 | 5.3 (4.5–6.2) |
| 2013 | 3486 | 0.5 | 2922 | 81.4 (79.4–83.2) | 488 | 16.3 (14.6–18.3) | 76 | 2.3 (1.7–3.2) |
Abbreviation: n, sample size; 95% CI, 95% confidence interval for weighted percentage.
a Although this item did not load as high on the same factor as the rest of seven items and was removed from the analysis when creating the mean score in Table 7,we still present it here for illustrative purposes.
Table 7Adjusted mean scores for work and role expectations, and personal fear and social avoidance subscales by sociodemographic characteristics — 2005 SummerStyles and 2013 FallStyles.
| Sociodemographic characteristics | 2005 | 2013 | ||
|---|---|---|---|---|
| n | Adjusted mean (95% CI) | n | Adjusted mean (95% CI) | |
| Factor 1: work and role expectations | ||||
| Overall | 4284 | 2.20 (2.18–2.23) | 3365 | 2.22 (2.18–2.25) |
| Sex | ||||
| Male | 1864 | 2.25 (2.21–2.29) | 1682 | 2.27 (2.22–2.31) |
| Female | 2420 | 2.17 (2.13–2.20) | 1683 | 2.17 (2.13–2.22) |
| Age | ||||
| 18–34 | 763 | 2.30 (2.24–2.36) | 659 | 2.33 (2.25–2.41) |
| 35–54 | 2315 | 2.16 (2.13–2.20) | 1111 | 2.17 (2.11–2.24) |
| 55–64 | 608 | 2.12 (2.06–2.19) | 750 | 2.17 (2.10–2.25) |
| 65+ | 598 | 2.19 (2.10–2.27) | 845 | 2.16 (2.06–2.26) |
| Race/ethnicity | ||||
| White, non-Hispanic | 2933 | 2.17 (2.13–2.20) | 2587 | 2.15 (2.11–2.18) |
| Black, non-Hispanic | 513 | 2.38 (2.29–2.46) | 298 | 2.46 (2.35–2.57) |
| Hispanic | 567 | 2.24 (2.17–2.30) | 294 | 2.26 (2.16–2.37) |
| Other, non-Hispanic | 271 | 2.27 (2.17–2.37) | 186 | 2.40 (2.26–2.55) |
| Education | ||||
| ≤High school | 1341 | 2.32 (2.26–2.37) | 1205 | 2.30 (2.25–2.35) |
| Some college | 1556 | 2.22 (2.18–2.26) | 1071 | 2.18 (2.12–2.24) |
| College or more | 1387 | 2.09 (2.04–2.13) | 1089 | 2.13 (2.07–2.19) |
| Employment status | ||||
| Working | 2531 | 2.18 (2.14–2.21) | 1572 | 2.20 (2.15–2.25) |
| Self-Employed | 323 | 2.21 (2.10–2.32) | 242 | 2.18 (2.07–2.29) |
| Temporarily unemployed | 140 | 2.14 (1.99–2.29) | 224 | 2.21 (2.10–2.32) |
| Retired | 583 | 2.30 (2.22–2.39) | 870 | 2.23 (2.13–2.33) |
| Disabled | 228 | 2.19 (2.06–2.33) | 206 | 2.15 (2.00–2.30) |
| Other | 479 | 2.23 (2.15–2.31) | 251 | 2.33 (2.21–2.46) |
| Income | ||||
| $0–$24,999 | 1082 | 2.30 (2.24–2.35) | 542 | 2.44 (2.36–2.53) |
| $25,000–$59,999 | 1417 | 2.18 (2.13–2.22) | 1196 | 2.22 (2.16–2.28) |
| $60,000 or more | 1785 | 2.17 (2.12–2.21) | 1627 | 2.13 (2.09–2.18) |
| Marital status | ||||
| Married | 3191 | 2.18 (2.15–2.21) | 2160 | 2.22 (2.18–2.27) |
| Widowed/divorced/separated | 578 | 2.24 (2.17–2.31) | 549 | 2.26 (2.16–2.36) |
| Never married | 515 | 2.24 (2.16–2.32) | 656 | 2.18 (2.10–2.25) |
| Factor 2: Personal fear and social avoidance | ||||
| Overall | 4202 | 1.99 (1.96–2.02) | 3446 | 2.18 (2.14–2.22) |
| Sex | ||||
| Male | 1814 | 2.08 (2.03–2.13) | 1683 | 2.24 (2.19–2.29) |
| Female | 2388 | 1.92 (1.88–1.96) | 1663 | 2.13 (2.08–2.18) |
| Age | ||||
| 18–34 | 755 | 2.00 (1.93–2.07) | 662 | 2.27 (2.19–2.35) |
| 35–54 | 2284 | 1.94 (1.91–1.98) | 1111 | 2.11 (2.04–2.18) |
| 55–64 | 595 | 1.94 (1.88–2.01) | 749 | 2.12 (2.04–2.20) |
| 65+ | 568 | 2.13 (2.04–2.23) | 824 | 2.22 (2.11–2.32) |
| Race/ethnicity | ||||
| White, non-Hispanic | 2874 | 1.95 (1.92–1.98) | 2576 | 2.12 (2.08–2.16) |
| Black, non-Hispanic | 507 | 2.10 (1.99–2.21) | 293 | 2.27 (2.16–2.37) |
| Hispanic | 548 | 2.04 (1.94–2.15) | 291 | 2.18 (2.06–2.30) |
| Other, non-Hispanic | 273 | 2.17 (2.05–2.28) | 186 | 2.56 (2.39–2.73) |
| Education | ||||
| ≤High school | 1315 | 2.04 (1.98–2.10) | 1192 | 2.24 (2.18–2.30) |
| Some college | 1514 | 2.02 (1.96–2.07) | 1073 | 2.08 (2.02–2.14) |
| College or more | 1373 | 1.91 (1.87–1.96) | 1081 | 2.19 (2.13–2.26) |
| Employment status | ||||
| Working | 2497 | 2.00 (1.96–2.04) | 1565 | 2.17 (2.12–2.23) |
| Self-employed | 320 | 1.99 (1.85–2.13) | 243 | 2.17 (2.04–2.30) |
| Temporarily unemployed | 135 | 1.84 (1.71–1.98) | 226 | 2.25 (2.11–2.39) |
| Retired | 554 | 2.00 (1.90–2.10) | 851 | 2.19 (2.08–2.29) |
| Disabled | 231 | 1.85 (1.73–1.98) | 209 | 1.96 (1.79–2.12) |
| Other | 465 | 2.05 (1.96–2.14) | 252 | 2.27 (2.13–2.40) |
| Income | ||||
| $0–$24,999 | 1069 | 2.05 (1.97–2.13) | 541 | 2.29 (2.19–2.38) |
| $25,000–$59,999 | 1366 | 1.96 (1.91–2.01) | 1178 | 2.18 (2.11–2.24) |
| $60,000 or more | 1767 | 1.98 (1.92–2.03) | 1627 | 2.14 (2.09–2.20) |
| Marital status | ||||
| Married | 3133 | 1.95 (1.92–1.99) | 2162 | 2.17 (2.13–2.22) |
| Widowed/divorced/separated | 562 | 1.98 (1.90–2.06) | 537 | 2.22 (2.12–2.32) |
| Never married | 507 | 2.12 (2.02–2.21) | 647 | 2.18 (2.09–2.27) |
Abbreviation: n, sample size; 95% CI, 95% confidence interval for adjusted means.
a Adjustment includes all the demographic variables in the table.
3. Results
3.1 Descriptive statistics
The distributions of sex, race–ethnicity, and marital status were comparable between respondents in the 2005 and 2013 surveys (Table 1). The proportions of women and men were comparable in both years. Approximately two-thirds of each sample were non-Hispanic White; 11%, non-Hispanic Black; and 13%, Hispanic. Most respondents were married, but just over one-fifth never had been married. However, the distributions of age group, education, employment status, and family income differed between respondents in the 2005 and 2013 surveys. In 2013, significantly more respondents were 55–64 years of age (16.7%, 95% CI = 15.1–18.3) than in 2005 (12.9%, 95% CI = 11.9–13.9). A significantly higher percentage of respondents in 2013 (41.3%, 95% CI = 39.0–43.6) had a high school degree or less than in 2005 (31.0%, 95% CI = 29.4–32.5). A significantly higher percentage of adults in 2013 were unemployed (8.4%, 95% CI = 7.1–9.8 vs. 2.9%, 95% CI = 2.4–3.5) and retired (20.1%, 95% CI = 18.4–21.8 vs. 14.8%, 95% CI = 13.7–16.0) than in 2005. Correspondingly, adults were significantly less likely to be working in 2013 (48.1%, 95% CI = 45.8–50.4) than in 2005 (60.9%, 95% CI = 59.2–62.6). Furthermore, almost one-half of the 2013 adults reported having a family income of $60,000 or more (49.6%, 95% CI = 47.3–52.0), but only one-third (35.9%, 95% CI = 34.3–37.5) did so in 2005.
3.2 Exploratory factor analysis and reliability analysis
Initial EFA revealed a two-factor solution from the original 16 items for both the 2005 and 2013 datasets based on the Kaiser–Guttman rule (i.e., eigenvalues > 1.00) and the scree plot [
[50]
]. All eight items from the personal fear and social avoidance subscale had high loadings (i.e., ≥0.60) on the first factor. Seven of the items from the work and role expectation subscale also had high loadings on the second factor, except for the item, “I believe that there are work activities people with epilepsy cannot do safely.” This item loaded equally on both factors and weakly correlated with both of them (factor loading coefficient < 0.10). The same results were found in different subsamples (e.g., two random subsamples, a women-only sample, or young-adult-only sample). Therefore, this item was removed from the work and role expectation subscale when creating a mean score in the final analysis in Table 7.The KMO measure from the final EFA showed an acceptable measure of sampling adequacy (i.e., MSA ≥ 0.70) [
[52]
] for both years (MSA = .938 for 2005 and MSA = 0.948 for 2013). In both years, most values from the residual correlation matrix were less than 0.05, and none exceeded 0.5, suggesting an adequate fit of the data. In 2005, the factor loading coefficients for the seven items from the work and role expectation subscale ranged from 0.42 to 0.80, whereas the eight items from the fear and social avoidance subscale ranged from 0.62 to 0.82 (Table 2). In 2013, the corresponding factor loading coefficients were 0.44 to 0.77 for the work and role expectation subscale and 0.62 to 0.78 for the personal fear and social avoidance subscale (Table 3). Notably, the factor loading coefficients for the item, “I believe that people with epilepsy cannot have as good a quality of life”, ranged from 0.40 to 0.50 for both years, somewhat lower than these coefficients for the other items. However, because removing this item did not change the overall Cronbach's α coefficient significantly and because of its conceptual fit with the work and role expectation subscale, we retained this item in this subscale.Furthermore, Cronbach's α for assessing the internal consistency showed an acceptable internal consistency of both subscales in both years. For the work and role expectation subscale, Cronbach's α was 0.84 for 2005 and 0.85 for 2013. For the personal fear and social avoidance subscale, Cronbach's α values were 0.89 and 0.89, respectively. In both years, most polychoric correlation coefficients between any two items of the work and role expectations subscale were about 0.5, indicating a moderate association (Table 4). For the personal fear and social avoidance subscale, all polychoric correlation coefficients ranged from approximately 0.4 to 0.8 for both years, suggesting a moderate to strong association between any two items (Table 5).
3.3 Item level of agreement for each item of both subscales
3.3.1 Work and role expectations
Overall, in 2013, at least 70% of adults agreed that PWE can be as successful at work as others (74.2%), lead normal lives (73.9%), or cope with everyday life (69.8%; Table 6). In the same year, between 20% and 30% were unsure about work and role expectations for PWE, and small percentages (<7%) disagreed about the same statements.
More than half of the respondents also agreed that PWE can do anything others can do (56.4%) and believed that PWE can work 40 h per week (58.1%). Approximately two-thirds of the respondents also strongly or moderately disagreed with the statement, “I believe that people with epilepsy cannot have as good a quality of life.” Compared with 2005, a significantly higher percentage of adults in 2013 agreed that people with epilepsy can do anything (56.4% vs. 47.6%) and can cope with everyday life (69.8% vs. 55.0%; Table 6). However, adults in 2013 were significantly more likely to express concerns about PWE's abilities to perform certain work activities, with 59.5% strongly or moderately agreeing with the statement, “I believe that there are work activities people with epilepsy cannot do safely,” compared with the same response in 2005 (52.6%; Table 6).
3.3.2 Personal fear and social avoidance
In 2013, most respondents strongly or moderately disagreed with each item in the personal fear and social avoidance subscale (Table 6). However, 25.4% of adults agreed that they would be nervous around a person with epilepsy because they might have a seizure; 13.6% agreed that they would be afraid to be alone with a person with epilepsy; and 12.4% reported that they would avoid a person with epilepsy who has frequent seizures (Table 6). About 13% agreed that they would not date a person with epilepsy, and 10% would not want their child to date a person with epilepsy. When looking at both years, negative attitudes increased in some cases (Table 6). For example, in 2005, 16.8% of respondents moderately or strongly agreed with the statement, “I would be nervous around a person with epilepsy because they might have a seizure,” vs. 25.4% who agreed in 2013. Similarly, in 2005, 7.6% agreed with the statement, “I would avoid a person with epilepsy who has frequent seizures,” vs. 12.4% who agreed with this statement in 2013. However, in contrast to the responses expressed in previous items, the percentage of respondents who strongly or moderately agreed with the statement, “I would be embarrassed if someone in the family had epilepsy”, was significantly lower in 2013 (2.3%) than in 2005 (5.3%). Generally, there was a corresponding shift in more people who neither agreed nor disagreed with the statements on this factor in 2013 than in 2005.
3.4 Adjusted mean scores by sociodemographic characteristics
After validating each subscale, we calculated the mean scores of the work and role expectations subscale (7 items) and the fear and social avoidance subscale adjusted for demographic and socioeconomic characteristics (8 items).
3.4.1 Work and role expectations
Between 2005 and 2013, the adjusted mean scores for work and role expectations did not differ significantly overall or between any subgroups (Table 7). However, within each year, the mean scores for this factor differed significantly by levels in most sociodemographic groups except for marital status. In 2005, but not in 2013, the mean score for men (2.25) was significantly higher (more negative) than that for women (2.17) (Table 7). In both years, the adjusted mean score for respondents 18–34 years of age was significantly higher (reflecting more negative attitudes) than that for those 35–54 and 55–64 years of age. Blacks (2005: 2.38; 2013: 2.46) also had a significantly higher mean score than Whites (2005: 2.17; 2013: 2.15) in each year. Respondents with a high school degree or less (2005: 2.32; 2013: 2.30) or a family income under $24,900 (2005: 2.30; 2013: 2.44) also reported a significantly higher mean score, reflecting more negative attitudes, compared with a college degree or more (2005: 2.09; 2013: 2.13) or with an income of at least $60,000 (2005: 2.17; 2013: 2.13), respectively. In 2005, but not in 2013, adults who were retired also reported a higher mean score compared with those who were still working.
3.4.2 Personal fear and social avoidance
For the personal fear and social avoidance subscale, the adjusted mean scores for almost all sociodemographic groups were significantly higher in 2013, reflecting more negative attitudes among respondents compared with 2005. Overall, the adjusted mean score for 2013 (2.18) was about 10% higher than that in 2005 (1.99; Table 7). The adjusted mean scores for men and women were about 7% and 11% higher in 2013 than in 2005, respectively (Table 7). All age groups except for those 65 and above had significantly higher mean scores in 2013 than in 2005. The adjusted mean score for Whites was about 9% higher, and other non-Hispanics about 18% higher, in 2013 than in 2005, although these scores did not significantly increase over time for blacks and Hispanics. Similarly, compared with 2005, the adjusted mean scores were significantly higher in 2013 among those with a high school degree or less, those with a college degree or more, those who were married or widowed/divorced/separated, those who were working or unemployed, and for all categories of income.
Within each year, all the sociodemographic groups, except employment status and income level, differed significantly. In 2005, men (2.08) reported a significantly higher mean score (more negative attitudes) than women (1.92; Table 7). In 2005, respondents 65 years old or older scored significantly higher than any other age groups. In 2013, respondents 18–34 years of age reported a significantly higher mean score compared with those 35–54 years of age and those 55–64 years of age. In both years, the adjusted mean scores for Blacks (2005: 2.10; 2013: 2.27) and other non-Hispanics (2005: 2.17; 2013: 2.56) were significantly higher than those for Whites (2005: 1.95; 2013: 2.12). Respondents with a high school degree or less (2.04) reported significantly higher mean scores compared with those with a college degree or higher (1.91) only in 2005. In 2005, never married respondents (2.12) were also significantly more likely to report having fear and expressing social avoidance toward PWE than married respondents (1.95).
4. Discussion
This study suggests that the work and role expectations, and personal fear and social avoidance subscales of the ABLE scale demonstrate acceptable levels of validity and reliability in nationally representative US adult samples in two years. Consistent with the original scale development [
[35]
] but with one exception, our study confirmed a two-factor structure. Different from the original subscale for work and role expectations, the item regarding adults' beliefs toward work activities that PWE cannot do safely did not meet the level of factor loading needed to retain this item. This item did not share the same dominant factor or correlate well with the other seven items in the subscale, suggesting that it might capture a different domain of stigma. In the original ABLE scale development, DiIorio and her colleagues reported that this item had a high loading on the work and role expectations factor (−0.495), but, also loaded, albeit weakly, (0.272) on another subdomain — risk and safety concerns [[35]
]. This inconsistency might also result from its negative wording in the opposite direction to the other items of this subscale so that some respondents may have had difficulties reporting their responses accurately. Negatively worded items can be problematic because they often reduce the internal consistency, validity, and reliability of a scale and may form a separate “method factor” that might not be meaningful [[53]
]. At least 10% of respondents in one study were careless when reading a negatively worded item and responded in the same way as to the other positively worded items on a scale [[53]
]. Another potential explanation for the inconsistency with this item is that it resulted from mode effects associated with the different modes of survey administration in 2005 compared with 2013. We thus recommend future researchers consider using positive words for this item and examine this issue further using a different sample to determine if this item truly reflects a different underlying construct from the rest of the items.Moreover, consistent with the original ABLE scale, the other seven items of the work and role expectation subscale loaded high (≥0.4) on one dominant factor and revealed a high level of internal consistency (Cronbach's α ≥ 0.8) in both 2005 and 2013. As expected, all of the original eight items of the personal fear and social avoidance subscale also loaded high (≥0.6) on another dominant factor and achieved a high level of internal consistency (Cronbach's α ≥ 0.9) in both years. We found the same results when using different split samples — by two random samples, by sex, by age, and by race. In addition, attitudes on each subscale differed by sex, age, race/ethnicity, education, income, and marital status. Consistent with previous studies, men, younger adults, those at lower educational and income levels, the unmarried, and non-Whites generally reported more negative attitudes. Because the other two components of the ABLE scale (negative stereotypes and risk and safety concern) were validated previously [
[33]
], our study further confirms that this scale can be used to measure and track changes nationally in the public's self-reported attitudes and behaviors toward epilepsy.More importantly, results from the item level analysis of two validated subscales showed some improvements in the public's expectations toward PWE between 2005 and 2013. For example, adults were significantly more likely in 2013 than in 2005 to believe that PWE have the ability to do things and to cope with everyday life just as much as those without epilepsy. In both years, most adults reported favorable opinions toward PWE's capabilities of being successful at work, leading normal lives, or working 40 h per week. Nevertheless, three out of five adults believed that there are work activities PWE cannot perform safely, and this concern was significantly higher in 2013 (60%) than in 2005 (53%). These observations are consistent with an earlier study in the United Kingdom, in which at least 90% of respondents believed that PWE had the potential to lead a normal life and be successful, even though 50%–80% of respondents suggested that PWE should not be employed in some occupations (e.g., being police officers, armed forces officers, heavy goods vehicle drivers, and being fire fighters) [
[54]
]. Generally, in our study, adults reported favorable expectations of PWE, and some of these expectations increased more recently. These improvements might result from the success of national awareness and education campaigns such as Entitled to Respect (E2R), Get the Word Out, and Take Charge of the Facts that have been launched since 2001 to target youth, young adults, and racial/ethnic groups to promote social inclusion and to reduce the stigma [[34]
]. These more favorable expectations might also reflect increased acceptance of efforts to accommodate and integrate people with disabilities to enable them to participate fully in society [[55]
].On the other hand, our study also suggests that many adults continue to express concern about being around or interacting with PWE. More troubling, this level of fear and avoidance was significantly higher in 2013 than in 2005. Adults in 2013 were significantly less likely to disagree with not wanting to date, with not wanting to let their child date, or with not wanting to work with PWE, as well as feeling uncomfortable around or being afraid to be alone with PWE. These observations are consistent with studies from other developed countries such as Greece [
[56]
] and Italy [[57]
] and a 2006 US population-based study, in which most respondents reported disagreeing with negative stereotypes about PWE, while still expressing risk and safety concerns such as feeling unsafe to ride in a car with a driver with epilepsy [[33]
].These findings suggest that increasing the public's knowledge about epilepsy might not be enough to change their attitudes or behaviors toward PWE. People make decisions based on both knowledge and emotions [
[58]
]. Growing research on emotion and decision-making suggests that emotional reactions precede thoughts [[59]
]. Some individuals might feel reluctant or threatened because of perceived risks (liability) associated with providing seizure response, even though they might be knowledgeable about this disorder or believe in full the capacities of PWE. Others might have an exaggerated fear about how seizure symptoms are manifested and seek to avoid experiencing a distressful reaction. Some might anticipate that avoidance is a “safer” bet relevant to an anticipated possibility (seizure) and consequence (first-aid need). Prospect theory, for example, suggests that individuals are generally averse to risk when making decisions because perceived losses loom larger than gains [[60]
]. Their decisions are based not only on knowledge but also on emotion, affect, and cognitive biases, which affect risk perception and decisional choices among different age groups [[61]
]. Negating misconceptions and myths and improving positive attitudes about epilepsy require effective communication messages and strategies that consider both individual cognitive processes (e.g., memory and personal relevance) and affective processes (e.g., uncertainty, panic, and distress). For example, although repeating factual messages about epilepsy might help reduce misconceptions about epilepsy, this repetition may unintentionally backfire if these messages reinforce myths by repeating them to negate them (e.g., “people with epilepsy can swallow their tongue”) [[62]
]. New research on emotion and decision-making might identify effective communication approaches to intervene on people's affective responses to witnessing or responding to seizures (e.g., validating, but alleviating possible distress; evoking and validating a prosocial response). Such research might also assess how these factors relate to the continuum of decisional processes (e.g., those who are unengaged, undecided, or uninterested) regarding behavior intention [[63]
]. People at different stages of awareness might be less or more resistant to persuasion. Substantial percentages of respondents in this study were “in the middle.” The opinions of these individuals might be easier to sway than those of individuals with a firm (negative) opinion. Additionally, increasing accurate and positive depictions of epilepsy in the media might also help increase positive attitudes and behaviors toward epilepsy among the general public [[13]
].Furthermore, among all eight statements comprising the personal fear and social avoidance subscale, adults were most likely (more than 80%) to disagree that they would be embarrassed if someone in the family had epilepsy, and only 2% agreed with that same statement in 2013, a significant decline from 5% in 2005. Because interpersonal contact is an important stigma-reducing strategy [
[64]
], the degree of personal familiarity with PWE might determine the level of support and acceptance. Research in two other stigmatizing conditions, HIV and mental illness, although inconclusive, seems to indicate that interventions that focus on contact, education, and the use of both information and skill-building tend to be relatively more effective at reducing stigma [65
, 66
]. Further research should evaluate if these interventions are effective on reducing stigma in epilepsy.Finally, in our study, adults' attitudes toward PWE, measured by the mean score of each validated subscale, differed among sociodemographic groups in both years. For example, men reported lower level of work and social role expectations for PWE than women in 2005 but not in 2013. Within each year, younger adults, Blacks, and adults with less education and income reported significantly lower levels of expectations for PWE. However, these differences in these sociodemographic groups did not change between 2005 and 2013. The level of personal fear and social avoidance also differed by adults' characteristics such as sex, age, race/ethnicity, education, and marital status. Men reported a significantly higher level of fear and excluding/avoidance behaviors toward PWE than women in 2013 but not in 2005. Young adults 18–34 years of age reported significantly lower levels of fear and social avoidance compared with adults 65 years of age and above in 2005, but higher levels compared with those 35–64 years of age in 2013. Blacks, adults with less education, and those who were never married were also significantly more likely to report being fearful of and more willing to avoid PWE. These observations extend those in a nationally representative 2003 survey of US adults, which found that the level of knowledge and familiarity with epilepsy differed by sex, age, and education [
[42]
]. More concerning is that the levels of negative attitudes and behaviors reported by almost all sociodemographic groups were significantly higher in 2013 than in 2005. Although this worsening trend could result from differences in the sample characteristics between the survey years, adjusting for these differences did not change our results.These results suggest that antistigma campaigns need to continue engaging targeted audiences to increase their effectiveness. In the United States, health is often socially determined. Some racial/ethnicity minorities and social groups are at greater socioeconomic disadvantage and are more vulnerable to limited health literacy and education resources [
[67]
] as a result of inequalities and stratification in our society. Thus, extra efforts are needed to ensure that health education materials and key messages are comprehensible to these audiences in order to achieve the desired outcomes. The Institute of Medicine recommends that the health-related information about epilepsy be written at sixth grade level or lower [[68]
]. Although we did not find any differences in the reported level of stigma among Latinos and other racial/ethnic groups, they might be more prone to persistent epilepsy-related stigma because of cultural and religious beliefs [[69]
]. Communication and awareness strategies need to take these cultural differences into consideration and be more racially and ethnically specific.Our study has several limitations. First, SummerStyles 2005 used a mail survey, whereas the FallStyles 2013 survey used the Internet, so that some of the differences we found might be attributable to changes in the mode of survey administration or the sample composition. However, this mode effect and the composition effect might be small because both surveys employed a nationally random sample that showed very similar distributions for some sociodemographic variables (i.e., sex, race/ethnicity, and marital status) and because adjusting for the differences in all sociodemographic variables in the sample characteristics did not change our results. Second, both surveys use self-reported data, making them subject to misclassification. Because of the sensitive nature of some topics, survey results might also be subject to social desirability bias. However, one study showed that the web-based surveys tend to produce more accuracy on sensitive topics [
[70]
]. Third, these surveys are not longitudinal studies, so that the associations and changes between these two survey years we observed may not be causal and may result from other potential confounders not adjusted for in our study. Fourth, most statistically significant differences reported were relatively small in magnitude.5. Conclusions
Our study suggests that the CDC's ABLE scale is a valid and reliable scale that can be used to study and to track the public's attitudes and behaviors toward PWE. Compared with 2005, US adults in 2013 reported level of expectations toward PWE improved, with regard to PWE's abilities to do things, cope with everyday life, and to have a good quality of life. However, many adults still expressed discomfort with being around a person with epilepsy, and these attitudes worsened from 2005 to 2013. Moreover, we found that the level of stigma differed by adults' sociodemographic characteristics such as sex, age, race/ethnicity, income, education, and marital status. Therefore, more continued efforts are needed not only to promote public awareness and knowledge about epilepsy but also to minimize perceptions of personal risk associated with seizures or seizure response in order to create a more socially inclusive environment for PWE [
[13]
]. Antistigma campaigns require multiple approaches and collaborative efforts among families, communities, and society to achieve effectiveness.Acknowledgments
The project was undertaken while Dr. Cui was under contract with CDC through the Oak Ridge Institute for Science and Education (ORISE) fellowship program.
The authors wish to thank Dr. Deanne Weber (Strategic Planning, Analytics & Research, Porter Novelli, 1615L Street NW, Suite 1150, Washington, DC 20036) for her technical assistance and critical review of the survey methods of this manuscript.
Disclosure
Wanjun Cui has no conflicts of interest to report.
Rosemarie Kobau has no conflicts of interest to report.
Matthew M. Zack has no conflicts of interest to report.
Janice M. Buelow has no conflicts of interest to report.
Joan K. Austin has no conflicts of interest to report.
Appendix A.
Tabled
1
| Strongly disagree | Strongly agree | ||||
|---|---|---|---|---|---|
| Work and role expectations subscale | |||||
| I believe that people with epilepsy can do anything I can do. | 1 | 2 | 3 | 4 | 5 |
| I believe that people with epilepsy are able to cope with everyday life. | 1 | 2 | 3 | 4 | 5 |
| I believe that people with epilepsy cannot have as good a quality of life. | 1 | 2 | 3 | 4 | 5 |
| I believe that people with epilepsy can be as successful at work as others. | 1 | 2 | 3 | 4 | 5 |
| I believe that people with epilepsy can work 40 h per week. | 1 | 2 | 3 | 4 | 5 |
| I believe that there are work activities people with epilepsy cannot do safely. | 1 | 2 | 3 | 4 | 5 |
| I expect as much from people with epilepsy as from others. | 1 | 2 | 3 | 4 | 5 |
| I believe that people with epilepsy can lead normal lives. | 1 | 2 | 3 | 4 | 5 |
| Personal fear and social avoidance subscale | |||||
| I would be nervous around a person with epilepsy because they might have a seizure. | 1 | 2 | 3 | 4 | 5 |
| I would not date a person with epilepsy. | 1 | 2 | 3 | 4 | 5 |
| I would not want my child to date a person with epilepsy. | 1 | 2 | 3 | 4 | 5 |
| I would be uncomfortable being around a person with epilepsy. | 1 | 2 | 3 | 4 | 5 |
| I would not want to work with someone who had epilepsy. | 1 | 2 | 3 | 4 | 5 |
| I would be afraid to be alone with someone with epilepsy. | 1 | 2 | 3 | 4 | 5 |
| I would avoid a person with epilepsy who has frequent seizures. | 1 | 2 | 3 | 4 | 5 |
| I would be embarrassed if someone in the family had epilepsy. | 1 | 2 | 3 | 4 | 5 |
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Article info
Publication history
Published online: September 23, 2015
Accepted:
August 30,
2015
Received:
August 23,
2015
Footnotes
☆Disclaimer: the findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
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