title: Epilepsy or seizure disorder? The effect of cultural and socioeconomic factors on self-reported prevalence.
abstract: Self-reported epilepsy may be influenced by culture, knowledge, and beliefs. We screened 6420 residents of the District of Columbia (DC) for epilepsy to investigate whether socio-demographics were associated with whether they reported their diagnosis as epilepsy or as seizure disorder. Lifetime and active prevalence rates were 0.54% and 0.21%, respectively for 'epilepsy' and 1.30% and 0.70%, respectively for 'seizure disorder'. Seizure disorder was reported significantly more often than epilepsy among blacks, females, respondents≥50years, those with lower level education, respondents who lived alone and in low income neighborhoods, and those who resided in DC for at least five years. Clinicians should assure that patients and caregivers understand that epilepsy is synonymous with seizure disorder and other culturally appropriate terms, in order to optimize compliance with treatment, disease management instructions, and utilization of other resources targeted at persons with epilepsy. Furthermore, education and awareness campaigns aimed at improving access-to-care, reducing stigma, and increasing awareness of adverse events, such as SUDEP, should include a more diverse definition of epilepsy in their messages.
authors: RTI International, Biostatistics and Epidemiology Division, 6110 Executive Boulevard, Rockville, MD 20852, USA. Electronic address: byk@rti.org.
authors: Barbara L
authors: BL
authors: Kroner
authors: GfK Custom Research, LLC Marketing & Data Sciences, Wayne, PA, USA. Electronic address: mansour.fahimi@gfk.com.
authors: Mansour
authors: M
authors: Fahimi
authors: Children's National Health Systems, Division of Epilepsy and Neurophysiology, 111 Michigan Avenue NW, Washington, DC 20010, USA. Electronic address: wgaillar@childrensnational.org.
authors: William D
authors: WD
authors: Gaillard
authors: RTI International, Survey Research Division, 3040 Cornwallis Road, Research Triangle Park, NC 27709, USA. Electronic address: aek@rti.org.
authors: Anne
authors: A
authors: Kenyon
authors: Center for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, 1600 Clifton Road, Atlanta, GA 30329, USA. Electronic address: david.j.thurman@emory.edu.
authors: David J
authors: DJ
authors: Thurman
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001364:Awareness; D003469:Culture; D004827:Epilepsy / Q000453:epidemiology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance; D015995:Prevalence; D012640:Seizures / Q000453:epidemiology*; D057566:Self Report; D012959:Socioeconomic Factors; D055815:Young Adult
keywords: Cultural bias; Prevalence; Race; Seizure disorder; Self-report; Stigma