About 3.4 million people in the U.S. and 46 million people worldwide have active epilepsy [1,2]. Examining and improving knowledge and attitudes about epilepsy has been a public health priority in the U.S. and internationally because of the longstanding stigma around the disorder [3-7]. Several U.S. studies in the past two decades examined attitudes toward, or perceived knowledge about, epilepsy in nationally representative samples of U.S. adults, or in population subgroups [3,4,8-10]. Despite differences in methodologies, some of these studies have found that negative stereotypes about epilepsy have declined (e.g., people with epilepsy are possessed by spirits; people with epilepsy should not marry), and beliefs about the capacities of people with epilepsy have improved (people with epilepsy can do anything others can do, and can cope with everyday life) substantially in most, but not all, U.S. population subgroups [4,8,9,10]. Yet, continued discomfort with seizures underlies worsening public attitudes associated with the possible avoidance behaviors. For example, more U.S. adults reported in 2013 than in 2005 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) [8]. Almost two decades ago, about one-third of U.S. adults reported knowing someone with epilepsy, but few perceived themselves to be knowledgeable about epilepsy (~25%), familiar with seizure first aid (~23%), or familiar with the U.S. Epilepsy Foundation (~24%) [3]. Epilepsy is a spectrum disorder with varying symptom severity. But in the public mind, epilepsy is typically linked with generalized seizures (commonly referred to with the outdated term “grand mal” seizures) because these symptoms are more easily recognized given their overt physical manifestations, and the historical over-representation of these types of seizures in art, books, television, and other media [11,12]. As recently as 2020, the social media platform TikTok promulgated a “Seizure Challenge” that grossly derided people with epilepsy and perpetuated the focus on generalized seizure symptoms [13]. The perception that epilepsy is characterized primarily by generalized seizure symptoms is especially problematic as focal seizures are more common in the U.S. population [14,15]. Signs and symptoms of focal seizures are more nuanced and therefore may go unrecognized by the person experiencing them as well as by others—who often attribute these symptoms to other causes—resulting in delays in diagnosis, appropriate treatment, and appropriate first aid that could prevent adverse outcomes [11,15]. This study had three goals: (1) to update previous estimates describing U.S. adults’ perceived knowledge about epilepsy and seizure first aid and confidence in providing seizure first aid; (2) to examine, for the first time, U.S. adults’ recognition of common signs and symptoms of both generalized and focal seizures to identify knowledge gaps and inform new public awareness efforts; and (3) to provide baseline reach data coinciding with the November 2016 launch of a U.S. Centers for Disease Control and Prevention (CDC)-supported four-year Epilepsy Foundation public awareness campaign, #ShareMySeizure, conducted in partnership with the CBS Corporation media network’s Community Partnership Division.

Four sets of questions designed to assess familiarity with epilepsy symptoms and knowledge about epilepsy causes were developed for inclusion on the 2017 ConsumerStyles survey (Table 1). ConsumerStyles is one of a series of annual, online panel surveys of the U.S. adult population aged 18 or older conducted by Porter Novelli Public Services using KnowledgePanel [16]. ConsumerStyles is licensed by the CDC for audience analysis in health communication planning. ConsumerStyles collects data on demographics, health conditions, health beliefs, awareness of health risks, and health-related behaviors. Panel members are randomly recruited using probability-based sampling by address to reach respondents regardless of whether they have landline phones or internet access. If needed, households are provided with a laptop computer and internet access to complete one or more of the panel surveys. The Fall ConsumerStyles Survey is the third wave of the online panel surveys. The initial wave (Spring ConsumerStyles) was fielded in the spring of 2017 and sent to 10,916 panelists [16]. Panelists who completed the spring survey received an incentive of cash reward points worth $10.00. Panelists received three different reminders—once each week of the field period. The ConsumerStyles survey (administered from September 21 to October 3, 2017) was sent to a random sample of 4633 panelists 18 years old or older who answered the spring survey. E-mail reminders were sent to non-responders on the 3rd and 7th days of the field period. Respondents who completed the survey received an incentive of cash reward points worth $5.00. The median survey completion time was 29 minutes. Respondents who did not answer at least half of the questions were removed from the final dataset as incomplete cases (n = 13). The final sample included 3,547 adults who completed the survey for a response rate of 76.6%. ConsumerStyles data are weighted to match the March 2016 U.S. Current Population Survey proportions on eight factors: gender, age, household income, race/ethnicity, household size, education, Census Region, and metropolitan status. ConsumerStyles survey data have been demonstrated to be valid for reporting health outcomes when compared with the Behavioral Risk Factor Surveillance System [17].

The first set of six epilepsy questions asked respondents about their familiarity with epilepsy—whether they know someone with the disorder, had seen someone have a seizure, or heard anything about epilepsy in the past twelve months (Table 1). Because a new CDC-funded Epilepsy Foundation awareness campaign (#ShareMySeizure) was launched in November 2016, a single question asked respondents if they had seen or heard anything about this campaign. The second set of three epilepsy questions asked respondents about their perceived knowledge about epilepsy and their perceived knowledge of seizure first aid. The third question in the epilepsy set asked respondents in plain language both 11 common symptoms or signs of both generalized and focal seizures (Table 1) and five symptoms or signs known not to be associated with seizures (e.g., blood in the urine; sore throat); such contrasting questions help to distinguish respondents’ knowledge versus guessing about epilepsy symptoms and signs. Respondents were instructed to choose all that apply. We identified respondents who selected four or more, eight or more, all, or none of the correct epilepsy symptoms or signs. We developed the following formula to identify respondents who correctly identified all epilepsy symptoms or signs: [(Number correct selected) + (Number incorrect not selected)] = 17 correctly selected items. The final set of epilepsy questions asked respondents about their interest in learning more about epilepsy. In another survey question asking respondents about their familiarity with health-related non-profit organizations (e.g., The American Cancer Society, The American Heart Association, the Arthritis Foundation, and the Multiple Sclerosis Foundation), the “Epilepsy Foundation” was also included as another response option (not included in Table 1).

Licensed, proprietary aggregated data without individual identifiers were provided to CDC. SAS v 9.4 was used for analysis. We used stratified analysis and descriptive statistics to examine differences in knowledge about epilepsy symptoms and familiarity with epilepsy by age group, sex, race/ethnicity, education, metropolitan status (i.e., urban vs. rural geographic region), and by knowing someone with epilepsy to inform the development of targeted educational interventions. Statistically significant differences (significance level = 0.05) among categorical variables were identified with P-values from chi-square statistics that compare observed values with subgroup expected estimates.

Few U.S. adults felt knowledgeable about epilepsy (16%), knew seizure first aid (25%), or had confidence in being able to help someone having a seizure with appropriate seizure first aid (20%) (Table 2). Twenty-three percent of respondents reported they knew someone with epilepsy, and 68% reported that they did not (Table 3). Adults who knew someone with epilepsy were more likely than those who did not to be knowledgeable about epilepsy (29% vs. 11%, p < 0.001); to know what to do if someone had a seizure (42% vs. 20%, p < 0.001), and to feel more confident about providing appropriate first aid (34% vs. 16%, p < 0.001) (Table 2).

Women did not differ from men with respect to being knowledgeable about epilepsy, to know what to do if someone had a seizure, and to feel confident about helping someone with a seizure with appropriate first aid (Table 2). Among all age groups, the youngest (18–24 years) and the oldest (≥65 years) adults were least likely to report knowing what to do if someone had a seizure (p < 0.01) and feeling confident that they could help someone having a seizure with appropriate first aid (p < 0.001) (Table 2). Compared to adults with at least some college education, adults with a high school degree or less were the least knowledgeable about epilepsy, most unfamiliar with seizure response, and the least confident in their ability to help someone with appropriate seizure first aid (all p < 0.001) (Table 2). Perceived knowledge about epilepsy, seizure response, or confidence in providing appropriate first aid for seizure response did not differ among adults by race-ethnicity or by metropolitan region (Table 2).

Thirty-one percent of U.S. adults reported having seen someone have a seizure associated with epilepsy, and 13% were unsure about seeing someone have a seizure (Table 3). Fifty-five percent of U.S. adults reported seeing someone have a seizure on television, and 41% reported witnessing a seizure in a community setting (Table 3). Six percent reported recently reading or hearing about epilepsy in the media. (The question, “If you have heard anything about epilepsy during the past 12 months, where have you heard it?” was asked of all respondents.) Most read or heard about epilepsy by television (10%), family or friends (10%), or the internet (7%) (Table 3). In 2017, over 70% of respondents reported being familiar with organizations such as the American Cancer Society and American Heart Association. Fewer were familiar with the Multiple Sclerosis Foundation (37%), the Arthritis Foundation (32%), and the Epilepsy Foundation (18%) (Table 3).

More than one-half of adults correctly identified symptoms or signs associated with generalized epilepsy (e.g., eyes fluttering [56%]; rhythmic jerking [67%]; falling to the ground [68%]; uncontrolled shaking [75%]) (Table 3). Fewer identified symptoms or signs associated with focal seizures as symptoms or signs of epilepsy (e.g., walking aimlessly [15%]; hallucinations [10%]; déjàvu [5%]) (Table 3). Between 1% and 3% of adults incorrectly identified as epilepsy symptoms or signs symptoms not associated with epilepsy (e.g., blood in the urine). Of the eleven response items comprising the correct epilepsy symptoms or signs, 60% percent of adults selected a combination of four or more correct symptoms or signs, 9% of adults selected eight or more, but only 1% selected all the correct symptoms or signs (Table 3). Of the 17 response items comprising the total of correct selection of epilepsy symptoms or signs and omission of incorrect epilepsy symptoms or signs, 59% of U.S. adults chose 10 or more symptoms or signs as correctly identifying epilepsy while excluding symptoms or signs not identifying epilepsy; only 8% chose 14 or more symptoms or signs as correctly identifying epilepsy while excluding symptoms or signs not identifying epilepsy (Table 3). Familiarity with seizure signs and symptoms varied by sex, age, race/ethnicity, education, and whether someone knew someone who had epilepsy (data available upon request).

One out of three U.S. adults reported wanting to learn more about epilepsy; 15% reported that they wanted to learn more because they know someone with the disorder; 9% wondered if symptoms in themselves or loved ones were seizures; and among the 32.6% of adults who answered that they wanted to learn more about epilepsy symptoms, 62% of these respondents indicated that they had heard about epilepsy and wanted to learn more about it (Table 3). About 1% of U.S. adults had heard of the Epilepsy Foundation #ShareMySeizure campaign.

Compared with findings from the 2002 HealthStyles Survey, when respondents were asked similar questions, fewer U.S. adults in 2017 perceived themselves as knowledgeable about epilepsy and about how to help someone having a seizure [3]. Fewer U.S. adults (23%) reported knowing someone with epilepsy in 2017 than in 2002 (30%), but as in 2002, more adults who knew someone with epilepsy perceived themselves to be knowledgeable about it and in seizure first aid [3]. Interestingly, about the same percentages of U.S. adults in 2017 as in 2002 reported seeing someone have a seizure in a community setting (40–50%) and on television (55–57%) [3]. However, differences between 2002 and 2017 must be interpreted with caution because the survey methodology changed over time (e.g., probability sample household mail survey vs. probability sample online panel survey). The U.S. population grew and changed significantly over this time period as well, with a growing older population and increases in racial/ethnic minority subgroups [18,19]. This population shift may underlie worsening trends from 2005 to 2013 for some subgroups regarding personal fear and social avoidance associated with epilepsy previously reported [8].

Despite the relatively small percentages of U.S. adults who perceived themselves to be knowledgeable about epilepsy, more than one-half of U.S. adults are familiar with a range of seizure symptoms. In a methodologically comparable 2017 panel survey of U.S. adults that examined perceptions, feelings, and knowledge related to heart health, 59% of U.S. adults know very little about heart health; although most recognized some typical heart attack symptoms (e.g., pressure/squeezing/fullness or pain in the center of one’s chest, pain in one or both arms), significantly fewer recognized more nuanced symptoms (e.g., pain in the back or jaw and nausea/vomiting) [20]. Another methodologically comparable 2016 panel survey examining the U.S. public’s attitudes and awareness of eye health found that knowledge about specific eye disorders and risk factors was suboptimal and varied significantly by population subgroups [21]. Purvis-Cooper et al. (2016) used 2012 ConsumerStyles data to show that more than 70% of U.S. women without a history of gynecologic cancer did not know about common symptoms associated with ovarian cancer [22]. Our study findings suggest that knowledge about epilepsy among the U.S. public is suboptimal, though generally on par with that of more common conditions such as heart disease, eye conditions, and ovarian cancer.

Although more than one-half of U.S. adults reported in 2017 not hearing anything about epilepsy in the previous year, television and family and friends emerged as the most common sources of information about epilepsy for those who reported hearing something about the disorder. This suggests that more recent public awareness strategies such as those launched by the Epilepsy Foundation in partnership with the CBS Community Partnership Division, in 2017 (#ShareMySeizure) and in 2019 (#StaySafeSide) in multiple television markets, may be an effective way to reach substantial proportions of the U.S. adult population. Although only 1% of the population in 2017 indicated exposure to the #ShareMySeizure campaign of the Epilepsy Foundation and CDC, this campaign was only formally launched in November 2016 on the CBS station in Chicago, with several nationwide digital/social media placements. Because ConsumerStyles was fielded in the summer of 2017, only a few respondents outside of the Chicago region or who did not access CBS media would have been exposed to the campaign. Because the #ShareMySeizure campaign was expanded in 2017 and later in 2019 to include more television markets (Philadelphia and Atlanta) and social media markets (Los Angeles and Tampa), our study findings can serve as baseline estimates for future evaluation studies to assess whether exposure to the campaign and any corresponding campaign web traffic increased with increasing reach into additional major U.S. metropolitan markets, resulting in increased knowledge about epilepsy and seizure first aid. Although this type of campaign evaluation requires substantial planning, it has been successfully used to assess reach and impact in mental illness [23].

This study’s large sample size enabled us to identify priority subgroups for intervention regarding epilepsy knowledge, symptom awareness, and first aid education and training—adults 18–24 and ≥65 years of age, and adults with a high-school degree or less. Moreover, testing of educational messages should be done to assess whether different content (e.g., medical information vs. personal testimonies) is more salient and motivational for these subgroups based on whether they strongly disagree with or are unsure of being knowledgeable about epilepsy or seizure first aid. The unsure group may have had some limited exposure to first aid training, may (incorrectly) believe calling for emergency assistance is sufficient first aid, and may require different educational content than those who strongly disagree (e.g., “remedial” vs. “introductory” messages). This requires additional study.

Although reassuring that U.S. adults who knew someone with epilepsy were more likely to express being knowledgeable about the disorder and believed themselves capable of providing seizure first aid, the relatively low percentages even here indicate a need for improvement. Whether respondents had close or distant relationships with the person with epilepsy they know could affect individual motivation to become more knowledgeable about epilepsy or seizure first aid. Noteworthy is the finding that one out three U.S. adults wanted to learn more about epilepsy, most of whom indicated general curiosity about the disorder, with fewer indicating they wanted to learn more because they knew someone with epilepsy or were concerned about symptoms in themselves or others. These findings underscore the importance of applying a theoretical approach to design and evaluate communication strategies so that targeted messages are framed appropriately and applied to mobilize different actions (e.g., acquiring information; talking to a doctor about symptoms) depending on an individual or group’s “stage” of readiness or motivation to acquire epilepsy information [24].

This study has several limitations. First, all findings are based on unvalidated self-reports of perceived knowledge about epilepsy, appropriate seizure first aid, and confidence in providing first aid. Perceived knowledge may overestimate direct knowledge of these outcomes or seizure first aid behaviors. Second, although seizure symptoms range widely at an individual level, we were limited to describing the more commonly occurring seizure symptoms. Because some respondents could have been familiar with other symptoms not captured by our survey, we may have underestimated how familiar respondents were with different seizure symptoms. Third, the online panel’s experience with epilepsy may have been skewed because of sampling bias, but the survey weights should account for this limitation. The finding that 1.6% of respondents indicated that they wanted to know more about epilepsy because they had epilepsy themselves indirectly validates the survey methodology because this estimate is consistent with other U.S. population-based estimates of self-reported epilepsy prevalence based on differing survey methodologies [25,26]. Fourth, response bias related to question responses or format could have occurred, but this is unlikely because the survey randomizes responses for multiple response option questions, thereby minimizing this bias. Fifth, because the ConsumerStyles survey requires English fluency, it omits non-English speakers who may differ in their knowledge and experience with epilepsy. Finally, statistically significant differences among groups might be overestimated because of multiple comparisons.

Our study indicates that U.S. adults need more information about epilepsy, appropriate seizure first aid training, recognition of seizure symptoms, and familiarity with the Epilepsy Foundation as a resource for epilepsy information.