Table.
Summary of Epilepsy Disparities Reported in Previous Studies
| Year | Country of origin | Study design | Study population (n) | Male (%) | Mean age (y) | Key Finding(s) |
| 20109 | The United States | Survey | 111 | 36.4 | 41.2 | Compared with White individuals, AA individuals had higher seizure frequency and scores on the BMQ indicating a higher mistrust of medications |
| 201010 | The United States | Retrospective study | 5,779 | 46.1 | 38.1 | <10% of patients with TLE receive ATL. Younger age and private insurance are independent predictors of receiving ATL, and AA race independently predicts decreased likelihood of receiving ATL |
| 2010e5 | The United Kingdom | Retrospective study | 846 | NS | NS | Whereas 43.7% of adults younger than 20 years were using the specialist service, only 2.3% of people with epilepsy who were 85 years and older had been referred |
| 201111 | The United States | Retrospective study | 108 | 54.6 | 42.3 | Compared with White individuals, AA individuals have significantly poorer AED adherence, as measured by the MPR. |
| 201112 | The United States | Prospective study | 566 | 44.7 | 42 | Low SES patients was associated with increased ED and general practitioner visits, greater likelihood of having uncontrolled seizures, drug-related side effects, to be stigmatized, and have a poorer QoL |
| 201213 | The United States | Retrospective study | Patients receiving lobectomy (n = 6,653) | 5.9 | 30.6 | White patients were more likely to have surgery than racial minorities, and privately insured individuals were more likely to receive lobectomy than those with Medicaid or Medicare |
| Patients not receiving lobectomy (n = 105,373) | 94.1 | 31.9 | ||||
| 201314 | The United States | Survey | 12,894 | 44.4 | NS | Lifetime prevalence was 1.53% overall; 0.77% in White patients, 2.13% in AA individuals, and 3.4% in those with less than a high school diploma. Prevalence of active epilepsy was 0.79% and followed similar subgroup comparisons as lifetime prevalence |
| 201315 | The United States | Cross-sectional study | 311 | 41.8 | 46 | PWE received 40.9% of quality improvement recommended care. AA individuals were more likely to receive ≥50% of QI recommended care compared with White individuals. AA individuals scored significantly worse than White individuals for 2 patient-reported measures: perceived racial/ethnic disparities and difficulties getting follow-up appointments |
| 2013e1 | The United States | Survey | White individuals (n = 113) | 30.1 | 42.9 | Annual household income, receiving disability benefits, and number of AEDs being currently used significantly distinguished White individuals from AA individuals. Furthermore, AA individuals reported higher utilization of religion, denial, emotional support, positive reframing, and planning as coping reactions compared with White individuals |
| AA individuals (n = 70) | 28.6 | 43 | ||||
| 2013e2 | The United States | Retrospective study | 213 | 45.1 | 37 | Patients of Asian/Pacific Islander or AA race were significantly less likely to pursue surgical treatment of epilepsy compared with White individuals. Limited English proficiency was also significantly associated with lower odds of surgery |
| 201316 | The United States | Retrospective study | Prevalence sample (n = 684,516) | 31.2 | NS | The incidence and prevalence of epilepsy were significantly higher in men, in older people, in AA individuals, and in people with pre-existing disability and/or comorbid conditions |
| Incidence sample (n = 80,478) | 28.5 | |||||
| 201317 | The United States | Retrospective study | 115,632 | 51 | NS | Characteristics such as age, race/ethnicity, insurance status, and the presence of comorbid conditions were associated with disparities in access to specialized care in PWE. |
| 2014e4 | The United Kingdom | Retrospective study | 15 | 40 | 67a | Patients interviewed did not cite difficulties in accessing hospitals, reluctance to attend clinics, older characteristics as limiting factors for older adults wanting to attend a specialist epilepsy clinic. However, there was concern for negative biases among professionals |
| 201418 | The United States | Retrospective study | 760,117b | 50.3 | 39.8 | The incidence of SE was higher among AA individuals, compared with White individuals and other races. Mortality, however, was lower among AA individuals compared with White patients and other races. AA men had the highest incidence, relatively younger age of onset, and the lowest mortality |
| 201419 | Germany | Retrospective study | 43,712 | 49.8 | 53.5 | AED treatment differed significantly among adults with epilepsy in Germany. Sex, insurance type, and place of residence strongly influenced AED administration |
| 201420 | The United States | Retrospective study | Hispanic (n = 66,663) | 44.9 | Without epilepsy (28) | Charges for medical services provided to Hispanic PWE between the ages of 18 and 49 were significantly less than those for non-Hispanic patients with epilepsy. Attributable factors included differences in insurance status, setting of care, and total number of procedures |
| With epilepsy (28) | ||||||
| Non-Hispanic (69,157) | 55.1 | Without epilepsy (47) | ||||
| With epilepsy (48) | ||||||
| 201421 | The United States | Retrospective study | 223 | 44.4 | 36.9 | AA and Asian/PI patients, as well as those with limited English proficiency, have significantly longer times to ATL after presurgical evaluation |
| 201522 | The United States | Retrospective study | Hispanics (n = 38) | 36.8 | 43.44 | Depression scores were significantly higher in Hispanic PWEs than in United States–born PWEs. Hispanic patients were also found to be receiving significantly less AEDs compared with their United States–born peers |
| United States–born (n = 47) | 34 | 40.72 | ||||
| 201523 | The United States | Cross-sectional study | NS | 54.2 | NS | An increment in the rates of epilepsy surgeries was noted across all age groups, in boys and girls, all races, and all payer types. The rate of increase was lowest in AA individuals and in children with public insurance |
| 201524 | The United States | Retrospective study | 695 | ECoG patients (53) | 25.9 | White race, private insurance coverage, and large, urban, and academic hospitals were significantly were associated with higher ECoG procedures compared with AA patients, government insurance coverage, and smaller, rural, and private practice institutions |
| Patients with epilepsy (49.6) | 30.6 | |||||
| 2016e3 | Canada | Retrospective study | 10,661 | 51 | 47 | Within 2 years of being defined as medically intractable, only 1.2% of the study population underwent epilepsy surgery. Death occurred in 12% of those with medically intractable epilepsy. Those who underwent the procedure were younger and had fewer comorbidities compared with those who did not |
| 201625 | The United States | Retrospective study | 67,733 | 49.4 | NS | The prevalence of epilepsy in the sample population was 0.69%, with higher rates in Hispanic than in non-Hispanic children and adolescents. A child or adolescent with epilepsy had an additional $9,103.25 per year in associated medical costs relative to children and adolescents who did not have epilepsy |
| 201626 | Canada | Retrospective study | 284 | 57 | 10.57 | Patients in the lowest income quintile had a significantly higher TTS relative to the highest income quintile and had significantly lower odds of an improvement in seizure frequency relative to the highest income quintile |
| 201627 | The United States | Retrospective study | Deceased PWE (n = 21, 451) | 51.8 | 61.8 | Deceased PWE were more likely to be rural residents, AA, older than age 45 years, Medicare insured, in the middle-income group, and have 5 or more comorbid conditions compared with living PWE. |
| Living PWE (n = 41, 343) | 50.9 | 35.1 | ||||
| 201728 | The United States | Retrospective study | 3240 | 35.7 | NS | TLE diagnosis was significantly greater for AA individuals than White individuals. Women were disproportionately represented in the study population, and AA women carried the most statistical weight for the TLE prevalence difference |
| 201729 | The United States | Retrospective study | Prevalent epilepsy group (n = 36,912) | 38.4 | NS | Monotherapy is common across all racial/ethnic groups of older adults with new-onset epilepsy, older AEDs are commonly prescribed, and treatment is frequently delayed |
| New epilepsy group (n = 3,706) | 35.1 | |||||
| Medicare random sample (n = 633,710) | ||||||
| 201730 | The United States | Retrospective study | Prevalent epilepsy group (n = 36,912) | 38.4 | NS | Beneficiaries without neurology care in deductible drug benefit phase or in high poverty areas were less likely to have QUIET-9 concordant care. Enzyme-induced AED use is high and concordance with recommendations low, among all racial/ethnic groups of older adults with epilepsy |
| New epilepsy group (n = 3,706) | 35.1 | |||||
| 201731 | The United States | Retrospective descriptive study | Kid's inpatient database (n = 6,672,829) | 4.5 | 47.9 | In both pediatric and adult admissions, there was an over-representation of Whites and underrepresentation of AA individuals, which persisted after stratifying by socioeconomic status. Female patients were underrepresented in epilepsy surgery, but gender disparities were partially explained by differences in socioeconomic status |
| National Inpatient Sample (n = 29,963,139) | 58.2 | 41.1 | ||||
| 201732 | The United States | Retrospective study | 208 | 51.8 | 10a | AA patients and hemispherectomy were independently associated with NSQIP-defined complications. Patients undergoing hemispherectomy were also at a significantly higher risk of unplanned readmission after pediatric epilepsy surgery |
| 201833 | The United States | Retrospective study | 1,964 | NS | NS | ICM complication rates were comparable with, if not lower than, standard resective surgery. Disparities in access to ICM exist, with AA individuals and those with Medicaid significantly less likely to undergo ICM. |
| 201934 | The United States | Retrospective study | 385 | 43 | 22 | AA patients with TLE were more likely to be female, have seizure onset in adulthood, and have normal MRIs compared with White counterparts with TLE. |
| 201935 | The United States | Retrospective study | 31,523 | 51 | 7a | Prevalence rates of childhood epilepsy were not significantly different across races/ethnicities |
| 201936 | The United States | Retrospective study | 24,159 | 47.7 | NS | There was a trend toward a decrease in the use of a VNS among adult patients with refractory epilepsy. Results also suggested that AA patients with refractory epilepsy were less likely to receive a VNS independently of other variables |
| 201937 | The United States | Retrospective study | 776 | 54 | 6.5 | After controlling for confounding socioeconomic and demographic factors, children of Hispanic ethnicity experienced a reduced likelihood of drug-responsive epilepsy and had longer median time to remission compared with White patients |
| 2019e12 | Norway | Survey | 1,182 | 31.5 | 41.8 | >90% of respondents wanted general information about epilepsy, and over 75% wanted information on more specific issues, like epilepsy surgery. Obtaining information about epilepsy surgery and neurostimulation was significantly associated with male sex |
| 202038 | The United States | Retrospective study | 14,337 | 48.6 | 44 | The overall median duration from first seizure code to epilepsy diagnosis code was 19.0 mo, and 56.0% filled an AED prescription. Some minorities were more likely to follow pathways with increased durations and delay to diagnosis, and the duration to diagnosis varied significantly across the care pathway |
| 202039 | The United States | Retrospective study | NS | NS | NS | Disparities in patients receiving epilepsy surgery by race/ethnicity were observed during 2010–2012, but they were not after 2013. Children with higher household income levels had consistently higher proportions of receiving epilepsy surgery than those with lower levels |
| 202040 | The United States | Retrospective study | AA (n = 58) | 42 | 37.9 | AA patients had a weaker relationship between lacosamide daily dose and serum levels as compared with White patients and required a higher lacosamide dose per weight to achieve similar levels |
| White individuals (n = 35) | 40 | 48.6 |
Abbreviations: AA = African American; AED = antiepileptic drug; ATL = anterior temporal lobectomy; BMQ-S = Beliefs About Medicines Questionnaire–Specific; CI = confidence interval; ECoG = electrocorticography; ICM = intracranial monitoring; MPR = medication possession ratio; NS = not specified; NSQIP = National Surgical Quality Improvement Program–Pediatric; OR = odds ratio; PWE = people with epilepsy; QoL = quality of life; QUIET-9 = Quality Indicator for Epilepsy Treatment 9; RR = relative risk; SE = status epilepticus; TLE = temporal lobe epilepsy; TTS = time to surgery.
a
Median age.
b
Refers to patient discharges with potential inclusion of patients with multiple hospital discharges during the study duration