Barbara L. Kroner, PhD, MPH
Disclosure Information:
Dr. Kroner has no disclosures.
Dr. Kroner was lead author on the screening survey study discussed in this article (Kroner BL, et al. Epilepsy or seizure disorder? The effect of cultural and socioeconomic factors on self-reported prevalence. Epilepsy Behav . 2016;62:214-217).
Approximately three-quarters of 6420 adult residents of the District of Columbia (DC) screened for epilepsy said they were diagnosed with a seizure disorder rather than epilepsy when given both choices in our population-based survey. The term ‘seizure disorder’ was chosen consistently more often than ‘epilepsy’ in all demographic subgroups, including gender, age, income, education, race, and ethnicity—suggesting there may be a general lack of understanding among patients about what epilepsy means. An implication of these findings is that, although a wealth of information about epilepsy is publicly available for or disseminated by medical providers to people with epilepsy, they may not be getting the message.
Epilepsy can be a complex diagnosis, and people may not associate their seizure condition with the term epilepsy for a variety of reasons. Such reasons include stigma, symptomatic etiology, cultural background, and the terminology used by their medical providers. When there is a known cause for the seizures, such as injury, cancer, stroke, or underlying syndrome, the affected individuals may be more inclined to associate their diagnosis with descriptive phrases that include the term seizure disorder. Medical providers may also tend to use these phrases more often with certain demographic populations, such as the elderly and those with diverse cultural backgrounds.
We conducted the survey in DC, one of the nation’s most culturally, racially, and economically diverse populations, to estimate the prevalence and incidence of epilepsy in various demographic categories associated with the clinical term epilepsy or the more generic term seizure disorder. A single-page, bilingual epilepsy survey was mailed to a representative sample of 20,000 households; it included the standard epilepsy screening question, “Ever diagnosed with epilepsy or a seizure disorder?” Rather than the traditional Yes/No answer choices, we provided answer choices of No, Yes epilepsy, and Yes seizure disorder. A positive response to the screening question, “Currently taking any medicine to control seizures?” was categorized as having active epilepsy or seizure disorder. All response data then were weighted to the DC population size at the time the survey was conducted and to reflect the sampling design. Respondents indicating a diagnosis of epilepsy or seizure disorder were sent a follow-up survey about the etiology of the seizures. The follow-up surveys were reviewed by an epileptologist, who categorized the etiology for each respondent as symptomatic or not symptomatic.
A total of 6420 adults responded to the screening survey, for an overall adjusted response rate of 37%. Among the respondents, there were more females (60.5%) than males (39.5%) and slightly more blacks (45.2%) than whites (44.4%). Half of the adults were at least 50 years of age, and 40% had attended at least some graduate school. There were 107 respondents who reported they had received a diagnosis of epilepsy or a seizure disorder at some time in their life. Subsequent weighted estimates and 95% confidence intervals (CI) for individual lifetime prevalence were 0.54% (95% CI, 0.34-0.74) for epilepsy and 1.30% (95% CI, 0.98-1.62) for seizure disorder, for an overall lifetime prevalence of 1.84% (95% CI, 1.47-2.21) for either condition. Adults with active epilepsy were also significantly more likely to identify their condition as seizure disorder than as epilepsy—0.70% (95% CI, 0.47-0.94) vs 0.21% (95% CI, 0.08-0.33).
For lifetime prevalence, seizure disorder was reported 2 to 3 times more often than epilepsy in almost all demographic subgroups except those 18 to 30 years of age, in whom the lifetime prevalence rates were equal for the 2 conditions. The prevalence of seizure disorder was significantly higher than epilepsy (non-overlapping 95% CI) among non-Hispanic blacks, females, those 50 years of age or older, those with only a high school education, those living in low-income neighborhoods, and those who had resided in DC for at least 5 years.
Similarly, the prevalence of active seizure disorder was higher than the prevalence of active epilepsy in all subgroups, including those 18 to 30 years of age. Active seizure disorder was significantly higher than active epilepsy among the same 6 demographic subgroups that were identified for lifetime prevalence: non-Hispanic blacks, females, those 50 years of age or older, those with only a high school education, those living in low-income neighborhoods, and those who had resided in DC for at least 5years. In 4 subgroups (young adults, Hispanic, race other than white or black, and those residing in DC for less than 5 years), all of the affected respondents identified their condition as seizure disorder, not as epilepsy.
Additional surveys about epilepsy and seizure history were completed by 70 (65.4%) of the 107 respondents. Of these 70 respondents, 22 (31.4%) reported they were diagnosed with epilepsy and 48 (68.6%) reported they were diagnosed with seizure disorder. Symptomatic seizure etiology was noted by 35 (50%) of the respondents, and these were significantly more likely to identify their condition as seizure disorder than as epilepsy (29 [60.4%] vs 6 [27.3%]; P=.02). Specific causes of seizures in both groups included trauma only, stroke only, drugs or alcohol only, trauma plus stroke, alcohol or drug use, and chronic medical condition such as multiple sclerosis, hypertension, congenital arteriovenous malformation, migraines, and brain tumor. Of note, in the overall group of 19 respondents who had seizures due to trauma, 3 had gunshot wounds to the head, which might occur less frequently in the general adult epilepsy population than in DC. Because of the small numbers involved, we were not able to calculate prevalence rates for the symptomatic respondents stratified by demographic characteristics.
The consistently higher number of respondents who self-identified with seizure disorder rather than with epilepsy across all subgroups, including the highly educated, suggests that those who chose seizure disorder are unlikely to be false positive cases of epilepsy. In addition to respondents in the lower socioeconomic groups, females identified significantly more often with seizure disorder than with epilepsy, a finding that may be related to social factors such as stigma. Also, cultural factors and beliefs likely influenced the preference for reporting seizure disorder over epilepsy.
In summary, our findings suggest that both epilepsy and seizure disorder and perhaps other culturally sensitive terms need to be used with patients in clinical practice to ensure they understand their diagnosis and to maximize adherence to treatment and disease management. Patients should understand the synonymy of the 2 terms, particularly because of the overabundance of information available to the public and on the internet that is labeled as epilepsy-specific. In addition, epilepsy education and awareness campaigns ideally should include a more diverse definition of epilepsy in their messages to reach the broadest population of affected individuals, many of whom are in socioeconomic groups at high risk for epilepsy.
To read the full article about this study, please click here .
