Barriers to and Disparities in Access to Health Care Among Adults Aged ≥18 Years with Epilepsy — United States, 2015 and 2017

Approximately 3 million U.S. adults have active epilepsy (i.e., self-reported doctor-diagnosed history of epilepsy and currently taking epilepsy medication or have had at least one seizure in the past year, or both) (1). One of the most common brain disorders, epilepsy poses a number of challenges for people living with this condition because its treatment can be complex, daily management might be inadequate to achieve seizure control, it limits social participation, and epilepsy is associated with early mortality.^† Previous studies indicate that persons with epilepsy are more likely to experience barriers or delays in receipt of certain types of care, including epilepsy specialty care, and that these delays are often associated with individual factors (e.g., seizure type) or social determinants of health (e.g., household income or provider availability) (2–4). To obtain updated estimates of access to health care among U.S. adults aged ≥18 years by epilepsy status, CDC analyzed pooled data from the 2015 and 2017 National Health Interview Survey (NHIS), the most recent years with available epilepsy data. Age-adjusted analyses comparing adults with active epilepsy or inactive epilepsy (i.e., self-reported doctor-diagnosed epilepsy but not currently taking medication for epilepsy and have had no seizure in the past year) with adults without epilepsy indicated that adults with active or inactive epilepsy were more likely to have Medicaid or other public insurance coverage and to report an inability to afford prescription medicine, specialty care, or vision or dental care. Adults with active or inactive epilepsy were more likely to take less medication than prescribed to save money, to be in families having problems paying medical bills, and to report delaying care because of insufficient transportation. Enhancing linkages between clinical and community programs and services by public health practitioners and epilepsy health and social service providers can address gaps in access to health care.

NHIS is an annual, nationally representative household survey of the U.S. civilian, noninstitutionalized population.^§ Supplementary questions on epilepsy were added to the 2015 and 2017 Sample Adult Core component of NHIS, which includes one randomly selected adult aged ≥18 years from each randomly selected household. Adult respondents answered three questions about epilepsy to self-identify as a person with active, inactive, or no epilepsy (epilepsy status).^¶ These case-ascertainment questions have been validated for use in community surveillance (5). Information about access to health care and income was collected in the NHIS Sample Adult, Person, and Imputed Income files. In 2015 and 2017, a total of 33,672 adults (final response rate = 55.2%) and 26,742 adults (final response rate = 53.0%), respectively, responded to the survey.** CDC pooled 2015 and 2017 data (combined response rate = 54.1%) to increase the reliability of estimates.

Estimates were weighted and age-standardized to the 2000 U.S. Census Bureau projected adult population using three age groups: 18–44, 45–64, and ≥65 years.^†† Age-standardized prevalences of selected access-to-care indicators^§§ were compared between adults with active epilepsy and no epilepsy and between those with inactive epilepsy and no epilepsy. Age-standardized percentages of adults with active, inactive, and no epilepsy who were in families having problems paying medical bills in the past year were calculated by selected sociodemographic characteristics. Analyses were conducted with SAS-callable SUDAAN (version 9.4; SAS Institute) to account for the respondent sampling weights and NHIS complex sample design. All reported differences are statistically significant (p<0.05 by two-tailed t-tests). After excluding respondents with missing information on epilepsy history (i.e., respondents who refused to respond or responded “don’t know” to the question “Have you ever been told by a doctor or other health professional that you have a seizure disorder or epilepsy?”), the final analytical sample included 60,281 (99.0%) respondents. This activity was reviewed by CDC and was conducted consistent with applicable federal law and CDC policy.^¶¶

During 2015 and 2017, adults were less likely to be uninsured if they had active (6.5%) epilepsy compared with those without epilepsy (11.0%) (Table 1). Adults with active or inactive epilepsy were less likely to have private insurance (39.3% and 53.9%, respectively) and more likely to have Medicaid or other public health insurance coverage (44.4% and 27.3%, respectively) than were those without epilepsy (64.9% [private] and 15.6% [Medicaid or other public health insurance]). More adults with active epilepsy than without epilepsy had trouble finding a doctor or other health care provider (5.4% versus 3.1%). More adults with active epilepsy (6.9%) or inactive epilepsy (4.9%) than without epilepsy (1.7%) reported delayed care because of lack of transportation. A greater percentage of adults with active or inactive epilepsy had difficulty affording a specialist (7.5% and 7.3%, respectively) than did those without epilepsy (4.1%); a similar pattern was observed for affording mental health care.

Adults with active or inactive epilepsy were more likely to report an inability to afford prescription medicine (13.2% and 12.4%), skipping medication doses to save money (9.3% and 12.9%), delaying obtaining refills (12.2% and 14.9%), taking less than the prescribed dosages of medicine to save money (10.8% and 11.6%), and being unable to afford dental care (20.3% and 19.3%) compared with those without epilepsy (6.1%, 6.1%, 8.3%, 6.4%, and 10.7%, respectively). Adults with active epilepsy were more likely to report an inability to afford eyeglasses (12.5%) than were those without epilepsy (5.9%).

Adults with active or inactive epilepsy were overall significantly more likely to be in families having problems paying their medical bills (27.9% and 27.6%, respectively) than were adults without epilepsy (14%) (Table 2). Selected subgroups of adults with active or inactive epilepsy (e.g., those aged <65 years and in a family earning <200% of the federal poverty status) were also more likely to be in families having problems paying medical bills.

Corresponding author: Niu Tian, [email protected], 770-488-5679.

¹Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion, CDC.

References

1. Zack MM, Kobau R. National and state estimates of the numbers of adults and children with active epilepsy—United States, 2015. MMWR Morb Mortal Wkly Rep 2017;66:821–5. https://doi.org/10.15585/mmwr.mm6631a1external icon PMID:28796763external icon
2. Kalilani L, Faught E, Kim H, et al. Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US. Neurology 2019;92:e2197–208. https://doi.org/10.1212/WNL.0000000000007448external icon PMID:30971487external icon
3. Thurman DJ, Kobau R, Luo YH, Helmers SL, Zack MM. Health-care access among adults with epilepsy: the U.S. National Health Interview Survey, 2010 and 2013. Epilepsy Behav 2016;55:184–8. https://doi.org/10.1016/j.yebeh.2015.10.028external icon PMID:26627980external icon
4. Schiltz NK, Koroukian SM, Singer ME, Love TE, Kaiboriboon K. Disparities in access to specialized epilepsy care. Epilepsy Res 2013;107:172–80. https://doi.org/10.1016/j.eplepsyres.2013.08.003external icon PMID:24008077external icon
5. Brooks DR, Avetisyan R, Jarrett KM, et al. Validation of self-reported epilepsy for purposes of community surveillance. Epilepsy Behav 2012;23:57–63. https://doi.org/10.1016/j.yebeh.2011.11.002external icon PMID:22189155external icon
6. Office of Disease Prevention and Health Promotion. Healthy people 2030: access to health services. Rockville, MD: US Department of Health and Human Services; 2020. https://health.gov/healthypeople/objectives-and-data/social-determinants-health/literature-summaries/access-health-servicesexternal icon
7. Wilson DA, Malek AM, Wagner JL, Wannamaker BB, Selassie AW. Mortality in people with epilepsy: a statewide retrospective cohort study. Epilepsy Res 2016;122:7–14. https://doi.org/10.1016/j.eplepsyres.2016.01.008external icon PMID:26900886external icon
8. Torres H, Poorman E, Tadepalli U, et al. Coverage and access for Americans with chronic disease under the Affordable Care Act: a quasi-experimental study. Ann Intern Med 2017;166:472–9. https://doi.org/10.7326/M16-1256external icon PMID:28114684external icon
9. Szaflarski M. Social determinants of health in epilepsy. Epilepsy Behav 2014;41:283–9. https://doi.org/10.1016/j.yebeh.2014.06.013external icon PMID:24998313external icon
10. Hermann B, Seidenberg M, Jones J. The neurobehavioural comorbidities of epilepsy: can a natural history be developed? Lancet Neurol 2008;7:151–60. https://doi.org/10.1016/S1474-4422(08)70018-8external icon PMID:18207113external icon

Abbreviation: ED = emergency department.
* The percentage estimates are weighted. Estimates are age-standardized to the 2000 U.S. Census Bureau projected population, aged ≥18 years, using three age groups: 18–34, 35–64, and ≥65 years.
^† Active epilepsy was defined as adults who answered that a doctor or health professional had ever told them they had a seizure disorder or epilepsy and also reported taking medication, having had one or more seizures in the past year, or both.
^§ Inactive epilepsy was defined as adults who reported a history of epilepsy but were not taking medication for epilepsy and had not had a seizure in the past year.
^¶ No epilepsy was defined as adults who answered no history of ever having been diagnosed with epilepsy or seizure disorder by a doctor or health professional.
** A t-test was conducted to compare the prevalence estimates between adults with active epilepsy and without epilepsy and between adults with inactive epilepsy and without epilepsy in the same category of indicator of access to care at the statistical significance level of 0.05 (p<0.05 by two-tailed t-tests).
^†† Other public included state-sponsored or state and federal jointly sponsored children’s health insurance program and any type of military coverage with or without Medicare or other government programs.
^§§ Among adults with at least one ED visit in the past year.
^¶¶ Problems paying bills was defined as answering “yes” to any of the following questions: “Did you/anyone in the family have problems paying or were unable to pay any medical bills in the past 12 months?” (this could include bills for doctors, dentists, hospitals, therapists, medication, equipment, nursing home, or home care) or “Do you/does anyone in your family currently have any medical bills that you are unable to pay at all?”

Abbreviations: FPL = federal poverty level; HS = high school.
* The percentage estimates are weighted. Age-standardized to the 2000 U.S. Census Bureau projected population, aged ≥18 years, using three age groups: 18–44, 45–64, and ≥65 years. Estimates for age groups are not age-standardized (i.e., presented as crude percentages).
^† Problem paying bills was defined as answering “yes” to any of the following questions: “Did you/anyone in the family have problems paying or were unable to pay any medical bills in the past 12 months?” (this could include bills for doctors, dentists, hospitals, therapists, medication, equipment, nursing home, or home care); or “Do you/does anyone in your family currently have any medical bills that you are unable to pay at all?”
^§ Active epilepsy was defined as having a diagnosis of epilepsy and either taking medication, having had one or more seizures in the past year, or both.
^¶ Inactive epilepsy was defined as adults who reported a history of epilepsy but were not taking medication for epilepsy and had not had a seizure in the past year.
** No epilepsy was defined as adults who answered no history of ever having been diagnosed with epilepsy or seizure disorder by a doctor or health professional.
^†† “Total number” represents unweighted numbers of those with active epilepsy, inactive epilepsy, or no epilepsy (denominator); “number” represents unweighted numbers of those living in a family having problems paying bills among those with active epilepsy, inactive epilepsy, or no epilepsy (numerator). Some of the categories do not sum to the total (e.g., education level or marital status) and categories might not sum to the sample total because of missing responses.
^§§ A t-test was conducted to compare the prevalence estimates between adults with active epilepsy and without epilepsy and between adults with inactive epilepsy and without epilepsy in the same category of characteristics at the statistical significance level of 0.05 (p<0.05 by two-tailed t-tests).
^¶¶ Estimate is unreliable because the relative SE was >30% but <50%. Results should be interpreted with caution.
*** The Other race and ethnicity category includes other non-Hispanic groups (American Indian or Alaskan Native, Asian, multiple race, and race group not releasable).
^††† Number and estimate were suppressed because denominator was <30 or relative SE was >50%.
^§§§ Poverty status was defined as the ratio of family income to federal poverty level. Estimates were calculated from the National Health Interview Survey income data file.