Last data update: Dec 09, 2024. (Total: 48320 publications since 2009)
Records 1-30 (of 53 Records) |
Query Trace: Kobau R[original query] |
---|
About 1.5 million community-dwelling US adults with active epilepsy reported uncontrolled seizures in the past 12 months, and seizure control varied by annual family income-National Health Interview Survey, United States 2021 and 2022
Kobau R , Luncheon C , Greenlund KJ . Epilepsy Behav 2024 157 109852 Uncontrolled seizures among people with epilepsy increase risk of adverse health and social outcomes including increased risk of death. Previous population-based studies have reported suboptimal seizure control and disparities in seizure control among U.S. adults with active epilepsy (self-reported doctor-diagnosed epilepsy and taking anti-seizure medicine or with ≥ 1 seizures in the past 12 months) by annual family income. This brief is based upon data from the 2021 and 2022 National Health Interview Survey (NHIS) to provide updated national estimates of the percentages of adults with active epilepsy with and without seizure control (0 seizures in past 12 months) vs. ≥ 1) by anti-seizure medication use and by annual family income. Annual family income was operationalized with NHIS poverty-income ratio (PIR) categories (i.e., total family income divided by the US Census Bureau poverty threshold given the family's size and number of children): PIR < 1.0, 1.0 ≤ PIR < 2.0; PIR ≥ 2.0. Among the 1.1 % of US adults with active epilepsy in 2021/2022 (estimated population about 2.9 million), 49.2 % (∼1.4 million) were taking antiseizure medication and reported no seizures (seizure control), 36.2 % (∼1.1 million) were taking antiseizure medication and reported ≥ 1 seizures (uncontrolled seizures), and 14.7 % (∼400,000) were not taking antiseizure medication and had ≥ 1 seizures (uncontrolled seizures). The prevalence of seizure control among those with active epilepsy varied substantially by annual family income, with a larger percentage of adults with PIR ≥ 2.0 reporting seizure control compared with those with PIR < 1.0. Opportunities for intervention include improving provider awareness of epilepsy treatment guidelines, enhancing access and referral to specialty care, providing epilepsy self-management supports, and addressing unmet social needs of people with epilepsy with uncontrolled seizures, especially those at lowest family income levels. |
Mortality and mortality disparities among people with epilepsy in the United States, 2011-2021
Tian N , Kobau R , Friedman D , Liu Y , Eke PI , Greenlund KJ . Epilepsy Behav 2024 155 109770 Studies on epilepsy mortality in the United States are limited. We used the National Vital Statistics System Multiple Cause of Death data to investigate mortality rates and trends during 2011-2021 for epilepsy (defined by the International Classification of Diseases, 10th Revision, codes G40.0-G40.9) as an underlying, contributing, or any cause of death (i.e., either an underlying or contributing cause) for U.S. residents. We also examined epilepsy as an underlying or contributing cause of death by selected sociodemographic characteristics to assess mortality rate changes and disparities in subpopulations. During 2011-2021, the overall age-standardized mortality rates for epilepsy as an underlying (39 % of all deaths) or contributing (61 % of all deaths) cause of death increased 83.6 % (from 2.9 per million to 6.4 per million population) as underlying cause and 144.1 % (from 3.3 per million to 11.0 per million population) as contributing cause (P < 0.001 for both based on annual percent changes). Compared to 2011-2015, in 2016-2020 mortality rates with epilepsy as an underlying or contributing cause of death were higher overall and in nearly all subgroups. Overall, mortality rates with epilepsy as an underlying or contributing cause of death were higher in older age groups, among males than females, among non-Hispanic Black or non-Hispanic American Indian/Alaska Native persons than non-Hispanic White persons, among those living in the West and Midwest than those living in the Northeast, and in nonmetro counties compared to urban regions. Results identify priority subgroups for intervention to reduce mortality in people with epilepsy and eliminate mortality disparity. |
COVID-19 vaccine hesitancy among US adults: Safety and effectiveness perceptions and messaging to increase vaccine confidence and intent to vaccinate
Weinstein N , Schwarz K , Chan I , Kobau R , Alexander R , Kollar L , Rodriguez L , Mansergh G , Repetski T , Gandhi P , Pechta L . Public Health Rep 2023 139 (1) 333549231204419 OBJECTIVE: Public health agencies have a critical role in providing effective messaging about mitigation strategies during a public health emergency. The objectives of this study were (1) to understand perceptions of COVID-19 vaccines, including concerns about side effects, safety, and effectiveness and how these perceptions influence vaccine decision-making among US adults and (2) to learn what messages might motivate vaccine uptake. METHODS: In April and May 2021, we conducted 14 online focus groups with non-Hispanic English-speaking and English- and Spanish-speaking Hispanic adults (N = 99) not vaccinated against COVID-19. We oversampled adults aged 18-39 years and rural residents and systematically assessed 10 test messages. Researchers used a standardized guide and an a priori codebook for focus group discussions, coding transcripts, and thematic analysis. RESULTS: Vaccine hesitancy factors included fear of the unknown; long-term side effects, including infertility; and beliefs that the vaccines were developed too quickly and were not sufficiently effective. Motivating factors for receiving vaccination included the ability to safely socialize and travel. Health care providers were considered important trusted messengers. Participants were critical of most messages tested. Messages that came across as "honest" about what is not yet known about COVID-19 vaccines were perceived more positively than other messages tested. Messages were seen as ineffective if perceived as vague or lacking in data and specificity. CONCLUSIONS: Messages that were simple and transparent about what is unknown about vaccines relative to emerging science were viewed most favorably. Health care providers, friends, and family were considered influential in vaccination decision-making. Findings underscore the benefits of research-informed strategies for developing and disseminating effective messages addressing critical issues in a public health emergency. |
The importance of understanding neighborhood environments in neurology care
Kobau R , Moura LMVR . Neurology 2023 100 (23) 1079-1080 Compared with US adults without epilepsy, adults with epilepsy are more likely to report an inability to afford prescription medicine and specialty care and delayed care because of transportation barriers or were in families having problems paying medical bills.1 Although social needs (e.g., public transportation and medication assistance programs) are experienced at the individual level, they may reflect community-level resources that, when present, foster health and, when absent, thwart it. Social determinants of health (SDOH) include the social, economic, institutional, and environmental factors that affect health outcomes.2,3 Although substantial research has documented disparities in individual-level social needs in people with epilepsy, scant research exists examining associations between community-level SDOH and epilepsy outcomes.3-5 |
COVID-19 vaccination status and related process of care outcomes among U.S. adults with active epilepsy-National Health Interview Survey, United States, 2021
Kobau R , Luncheon C , Pastula DM , Greenlund KJ . Epilepsy Behav 2023 143 109223 Growing research has examined the effects of the COVID-19 pandemic on people with epilepsy. There are no published national estimates of COVID-19 vaccination status among U.S. adults with active epilepsy. The purpose of this study is to use 2021 National Health Interview Survey (NHIS) data to examine select COVID-19-related outcomes by epilepsy status in a nationally representative sample of US adults. The study sample met the criteria for operationalization of epilepsy status (i.e., active epilepsy vs. no epilepsy history) and select questions related to COVID-19 testing, vaccination, delays in care, or experience with virtual care during the COVID-19 pandemic. All analyses accounted for the NHIS complex sample design and response sampling weights. Our study found that in 2021 receipt of one COVID-19 vaccination among U.S. adults with active epilepsy was generally similar to that among adults without a history of epilepsy. By age, adults aged 18-44 years with active epilepsy (27.0%) were significantly less likely to have reported receiving two COVID-19 vaccinations compared with their peers with no epilepsy history (39.1%). Compared to adults with no epilepsy history, adults with active epilepsy reported similar experiences and outcomes regarding COVID-19 testing and obtaining health care during the COVID-19 pandemic. This study provides baseline estimates of select COVID-19 outcomes among US adults with active epilepsy to guide interventions and additional studies. |
Active epilepsy prevalence among U.S. adults is 1.1% and differs by educational level-National Health Interview Survey, United States, 2021
Kobau R , Luncheon C , Greenlund K . Epilepsy Behav 2023 142 109180 This study used the most recent national data from the 2021 National Health Interview Survey (NHIS) to provide updated estimates of the prevalence of active epilepsy (self-reported doctor-diagnosed epilepsy, currently under treatment with antiseizure medicines or had at least 1 seizure in the past 12 months, or both) and inactive epilepsy (self-reported doctor-diagnosed history of epilepsy, not under treatment with antiseizure medicines and with no seizures in the past 12 months) overall and by sex, age groups, race/ethnicity, education level, and health insurance status. In 2021, 1.1% of U.S. adults, (approximately 2,865,000 adults) reported active epilepsy; 0.6% (approximately 1,637,000 adults) reported inactive epilepsy. The prevalence of active epilepsy and inactive epilepsy did not differ by age or sex. Active and inactive epilepsy prevalence differed by educational level. Weighted population estimates are reported for each subgroup (e.g., women; non-Hispanic Blacks) for program or policy development. Although active epilepsy prevalence has remained relatively stable over the past decade, this study shows that more than half of U.S. adults with active epilepsy have ≤high school diploma/GED, which can inform the development and implementation of interventions. Additional monitoring is necessary to examine population trends in active prevalence overall and in subgroups. |
A qualitative study of behavioral and social drivers of COVID-19 vaccine confidence and uptake among unvaccinated Americans in the US April-May 2021
Abad N , Messinger SD , Huang Q , Hendrich MA , Johanson N , Fisun H , Lewis Z , Wilhelm E , Baack B , Bonner KE , Kobau R , Brewer NT . PLoS One 2023 18 (2) e0281497 INTRODUCTION: Around one-third of Americans reported they were unwilling to get a COVID-19 vaccine in April 2021. This focus group study aimed to provide insights on the factors contributing to unvaccinated adults' hesitancy or refusal to get vaccinated with COVID-19 vaccines. METHOD: Ipsos recruited 59 unvaccinated US adults who were vaccine hesitant (i.e., conflicted about or opposed to receiving a COVID-19 vaccination) using the Ipsos KnowledgePanel. Trained facilitators led a total of 10 focus groups via video-conference in March and April 2021. Two coders manually coded the data from each group using a coding frame based on the focus group discussion guide. The coding team collaborated in analyzing the data for key themes. RESULTS: Data analysis of transcripts from the focus groups illuminated four main themes associated with COVID-19 vaccine hesitancy: lack of trust in experts and institutions; concern about the safety of COVID-19 vaccines; resistance towards prescriptive guidance and restrictions; and, despite personal reluctance or unwillingness to get vaccinated, acceptance of others getting vaccinated. DISCUSSION: Vaccine confidence communication strategies should address individual concerns, describe the benefits of COVID-19 vaccination, and highlight evolving science using factural and neutral presentations of information to foster trust. |
Implementing the COVID-19 Rapid Community Assessment on Vaccine Confidence: Lessons Learned from Alabama and Georgia.
Kobau R , Carry M , Rubenstein BL , Denson D , Uribe C , Zajac J , Kidder DP , Peacock G , Abad N . Public Health Rep 2022 137 (5) 333549221112610 Engaging communities is a key strategy to increase COVID-19 vaccination. The Centers for Disease Control and Prevention (CDC) COVID-19 Vaccine Confidence Rapid Community Assessment Guide was developed for community partners to obtain insights about barriers to COVID-19 vaccine uptake and to engage community partners in designing interventions to build vaccine confidence. In spring 2021, 3 CDC teams were deployed to Alabama and Georgia to conduct a rapid community assessment in selected jurisdictions. Data collection included interviews, listening sessions, observations, and street intercept surveys. We identified 3 facilitators and barriers to vaccine uptake: (1) planning and coordination, (2) capacity and implementation, and (3) attitudes and beliefs. We found that the use of the rapid community assessment in Alabama and Georgia was feasible to implement, useful in eliciting unique community concerns and dispelling assumptions, and useful in informing intervention strategies. Our results underscore the importance of community engagement in COVID-19 mitigation strategies. |
Barriers to and Disparities in Access to Health Care Among Adults Aged ≥18 Years with Epilepsy - United States, 2015 and 2017.
Tian N , Kobau R , Zack MM , Greenlund KJ . MMWR Morb Mortal Wkly Rep 2022 71 (21) 697-702 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. |
Seizure- or Epilepsy-Related Emergency Department Visits Before and During the COVID-19 Pandemic - United States, 2019-2021.
Sapkota S , Caruso E , Kobau R , Radhakrishnan L , Jobst B , DeVies J , Tian N , Hogan RE , Zack MM , Pastula DM . MMWR Morb Mortal Wkly Rep 2022 71 (21) 703-708 Seizures, transient signs or symptoms caused by abnormal surges of electrical activity in the brain, can result from epilepsy, a neurologic disorder characterized by abnormal electrical brain activity causing recurrent, unprovoked seizures, or from other inciting causes, such as high fever or substance abuse (1). Seizures generally account for approximately 1% of all emergency department (ED) visits (2,3). Persons of any age can experience seizures, and outcomes might range from no complications for those with a single seizure to increased risk for injury, comorbidity, impaired quality of life, and early mortality for those with epilepsy (4). To examine trends in weekly seizure- or epilepsy-related (seizure-related) ED visits(†) in the United States before and during the COVID-19 pandemic, CDC analyzed data from the National Syndromic Surveillance Program (NSSP).(§) Seizure-related ED visits decreased abruptly during the early pandemic period. By the end of 2020, seizure-related ED visits returned almost to prepandemic levels for persons of all ages, except children aged 0-9 years. By mid-2021, however, this age group gradually returned to baseline as well. Reasons for the decrease in seizure-related ED visits in 2020 among all age groups and the slow return to baseline among children aged 0-9 years compared with other age groups are unclear. The decrease might have been associated with fear of exposure to COVID-19 infection in EDs deterring parents or guardians of children from seeking care, adherence to mitigation measures including avoiding public settings such as EDs, or increased access to telehealth services decreasing the need for ED visits (5). These findings reinforce the importance of understanding factors associated with ED avoidance among persons with epilepsy or seizure, the importance that all eligible persons be up to date(¶) with COVID-19 vaccination, and the need to encourage persons to seek appropriate care for seizure-related emergencies** to prevent adverse outcomes. |
Drivers of US healthcare spending for persons with seizures and/or epilepsies, 2010-2018
Moura Lmvr , Karakis I , Zack MM , Tian N , Kobau R , Howard D . Epilepsia 2022 63 (8) 2144-2154 OBJECTIVE: To characterize spending for persons classified with seizure or epilepsy and determine if spending has increased over time. METHODS: In this cross-sectional study we pooled data from the Medical Expenditure Panel Survey (MEPS) household component files for 2010 to 2018. We matched cases to controls on age and sex of a population-based sample of MEPS respondents (community-dwelling persons of all ages) with records associated with a medical event (e.g., outpatient visit; hospital inpatient) for seizure, epilepsy, or both. Outcomes were weighted to be representative of the civilian, non-institutionalized population. We estimated the treated prevalence of epilepsy and seizure, healthcare spending overall and by site of care, and trends in spending growth. RESULTS: We identified 1,078 epilepsy cases, and 2,344 seizure cases. Treated prevalence was 0.38% (95% CI =0.34-0.41) for epilepsy, 0.76% (95% CI=0.71-0.81) for seizure, and 1.14% (95% CI: 1.08-1.20) for epilepsy or seizure. The difference in annual spending for cases compared to controls was $4,580 (95% CI: $3,362-$5,798) for epilepsy, $7,935 (95% CI: $6,237-$9,634) for seizure, and $6,853 (95% CI: $5,623-$8,084) for epilepsy or seizure, translating into aggregate costs of $5.4 billion, $19.0 billion, and $24.5 billion. From 2010 to 2018, the annual growth rate in total spending incurred for seizures and/or epilepsies was 7.6% compared to 3.6% among controls. SIGNIFICANCE: U.S. economic burden of seizures and/or epilepsies is substantial and warrants interventions focused on their unique and overlapping causes. |
When and why US primary care providers do and do not refer their patients with new-onset seizures or existing epilepsy or seizure disorders to neurologists-2018 DocStyles
Kobau R , Zack MM , Sapkota S , Sajatovic M , Kiriakopoulos E . Epilepsy Behav 2021 125 108385 Monitoring primary care providers' (PCP) attitudes and experiences with referrals of their patients with new-onset seizures or existing epilepsy/seizure disorders may help evaluate whether interventions to coordinate PCP and neurology care reduce treatment gaps and improve patient outcomes. To examine PCPs' attitudes toward, and experiences with, referral to specialty care of their patients with new-onset seizures or existing epilepsy/seizure disorders, we used cross-sectional 2018 DocStyles data to examine study outcomes. We selected a subsample of respondents who had a practice with at least 1% of patients with an epilepsy/seizure disorder and who answered questions about this disorder. We stratified provider actions, referral behavior, and referral enabling factors and barriers by epilepsy/seizure disorder caseload and provider type. We examined different patterns of responses by referral behavior and provider type. The final sample (n = 1284) included 422 family practitioners, 432 internists, 233 pediatricians, and 197 nurse practitioners. Most PCPs refer their patients with new-onset seizures to a neurologist, particularly to determine or confirm the diagnosis and appropriate treatment. Strikingly, about 40% of PCPs did not indicate a referral if their epilepsy/seizure disorder patient was unresponsive to treatment. Internists less likely referred their patients than pediatricians, nurse practitioners, or family practitioners. Less than one-third of all practitioners consulted seizure treatment guidelines. Prompt appointments, communication with the PCP, the patient's insurance, and referral back to primary care may facilitate referrals. Interventions that enhance enabling factors for guidelines-based care and that can increase opportunities for PCPs to consult with neurologists and/or refer their patients with uncontrolled seizures to specialty care are warranted. |
Developing epilepsy training capacity for primary care providers using the project ECHO telementoring model
McDonald SB , Privitera M , Kakacek J , Owens S , Shafer P , Kobau R . Epilepsy Behav 2021 116 107789 BACKGROUND: Primary care providers (PCPs) provide a large proportion of care for people with epilepsy (PWE) and need regular training for updates. However, PCPs treat patients in so many therapeutic areas that epilepsy often becomes a less important concern. We used an established telementoring program, Project ECHO (Extension for Community Healthcare Outcomes), and combined epilepsy education with general neurology topics to generate more interest among PCPs. METHODS: We offered 20 one-hour webinar sessions over a two-year period, each consisting of a panel of neurology experts, with a combination of case presentations, a 20-minute didactic presentation, and live, interactive question and answer. Attendees logged in from their own computers or phones, and all presentations were archived online for future viewing. Interviews with PCPs indicated a combination of epilepsy and general neurology topics would be better received, so epilepsy topics alternated monthly with general neurology topics (e.g., headache, stroke, and dementia). Session evaluation included participants' comfort in treating patients with neurological disorders and confidence in knowledge of the topic area. RESULTS: After the second session, mean attendance was 27.5 participants (range 15-38), with a total of 164 unique individual participants. Attendees were a mix of mostly regional, some out of state, and a few international learners, including practicing PCPs, trainees, and nurse practitioners. Archived presentations on our website were viewed 212 times; seizure topics were the most viewed. Mean evaluation scores for relevance, value, and increased knowledge were all in the "agree to strongly agree" range. Over 97% of respondents reported greater interest in improving care of patients with epilepsy or neurological disorders, and over 98% reported greater comfort and self-efficacy when treating patients with these conditions. Only eight cases were submitted for review prior to the sessions. CONCLUSIONS: We successfully piloted a telementoring program using Project ECHO methodology, which was effective in educating PCPs about epilepsy treatment. Combining epilepsy and other neurology topics was an effective strategy in garnering interest among PCPs, but additional methods are needed to encourage participants to present their own cases. |
In 2016, Medicaid and Medicare paid about 65% of all inpatient hospitalization costs for all-age persons hospitalized with epilepsy as the principal diagnosis
Kobau R , Boring M , Zack MM , Croft JB . Epilepsy Behav 2020 114 107601 The purpose of this study was to examine both the distribution of payers for inpatient hospitalizations (all-ages) by principal diagnosis status (epilepsy versus nonepilepsy) and selected organizational- and community-level factors associated with hospitalizations using the Agency for Healthcare Research and Quality's (AHRQ) Healthcare Utilization Project 2016 National Inpatient Sample (NIS) database. We compared cases with epilepsy (any ICD-10CM diagnostic code beginning with "G40") as a principal diagnosis ("epilepsy discharges") versus cases without epilepsy as the principal diagnosis ("nonepilepsy discharges"). Accounting for the complex survey design, we examined how the principal payer source, median income for Zip Code, admission type, hospital location, teaching status, and hospital region varied by principal diagnosis status. For persons of all ages with epilepsy as a principal diagnosis, Medicaid and Medicare public insurance paid for about 65% of inpatient hospitalization costs. The percentage paid by Medicaid among epilepsy discharges (31.6%) significantly exceeded that among nonepilepsy discharges (23.1%). The percentage paid by Medicare among epilepsy discharges (33.9%) was significantly less than that among nonepilepsy discharges (39.7%), as was payment by private insurers (26.1% vs. 30.1%). Median Zip Code income, hospital and admission characteristics, and geographic region differed between hospitalizations with epilepsy versus those with a nonepilepsy discharge. These findings may be used to inform stakeholders' understanding of epilepsy care-related costs and factors associated with hospitalizations for improved interventions and programs. |
Knowledge of and familiarity with epilepsy in U.S. adults: Results from the 2017 ConsumerStyles Online Panel Survey
Kobau R , Zack MM . Epilepsy Behav 2020 114 107535 Examining and improving knowledge and attitudes about epilepsy has been a public health priority because of stigma around the disorder. This study had three goals: (1) to update estimates describing U.S. adults' perceived knowledge about epilepsy, seizure first aid, and confidence in providing seizure first aid; (2) to examine U.S. adults' recognition of common signs and symptoms of generalized and focal seizures to inform public awareness efforts; and (3) to provide baseline estimates of exposure to an Epilepsy Foundation public awareness campaign, #ShareMySeizure, launched in November, 2016. Four sets of epilepsy questions were included on the 2017 Porter Novelli ConsumerStyles survey, an online panel survey of the U.S. adult population. We examined differences in study outcomes by sociodemographic factors and familiarity with someone with epilepsy. Small percentages of U.S. adults felt knowledgeable about epilepsy (16%), knew seizure first aid (25%), or reported having confidence in being able to help someone having a seizure with appropriate seizure first aid (20%). Fewer adults were familiar with signs of focal seizures compared to generalized seizures. About 1% of U.S. adults had heard of the #ShareMySeizure campaign. Television and family and friends emerged as the most common sources of information for those who reported hearing something about epilepsy. About 33% of U.S. adults wanted to learn more about epilepsy. 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. U.S. adults need and want more information about epilepsy, appropriate seizure first aid training, and recognition of seizure symptoms. |
Prevalence and trends in cigarette smoking among adults with epilepsy - United States, 2010-2017
Sapkota S , Kobau R , Croft JB , King BA , Thomas C , Zack MM . MMWR Morb Mortal Wkly Rep 2020 69 (47) 1792-1796 Cigarette smoking remains the leading cause of preventable disease and death in the United States (1). Although the percentage of all U.S. adults who smoke cigarettes has declined substantially since the mid-1960s (1,2), marked disparities persist, and declines have not been consistent across population groups (1,2). Studies have shown that cigarette smoking is as common, and sometimes more so, among adults with a history of epilepsy compared with those without a history of epilepsy, but reasons for this are unclear (3-6). Compared with adults without epilepsy, adults with epilepsy report lower household income, more unemployment and disability, worse psychological health, and reduced health-related quality of life (3,4,6,7). Trends in cigarette smoking among U.S. adults with epilepsy have not been previously assessed. CDC analyzed National Health Interview Survey (NHIS) data among 121,497 U.S. adults from 2010, 2013, 2015, and 2017 to assess current cigarette smoking by epilepsy status. From 2010 through 2017, the age-standardized percentages of current smoking were 24.9% among adults with active epilepsy, 25.9% among adults with inactive epilepsy, and 16.6% among adults with no history of epilepsy. After accounting for differences in data collection intervals and patterns in smoking status among subgroups, CDC found that current cigarette smoking declined significantly from 2010 to 2017 among adults with no history of epilepsy (19.3% to 14.0% [p<0.001]) and inactive epilepsy (29.2% to 16.2% [p = 0.03]), but declines among adults with active epilepsy were not statistically significant (26.4% to 21.8% [p = 0.2]). Epilepsy health and social service providers should promote smoking cessation resources to adults with active epilepsy who smoke cigarettes to help them quit smoking and to reduce their risk of smoking-related disease and death. |
Epilepsy by the numbers - From the US Centers for Disease Control and Prevention: Six in 10 adults with active epilepsy saw a neurologist or epilepsy specialist in the past year, United States, 2017
Kobau R , Sapkota S , Pennell PB , Croft JB . Epilepsy Behav 2020 112 107348 This study used the most recent national data on epilepsy from the 2017 National Health Interview Survey (NHIS) to examine the distribution of types of provider visits in the last 12 months among 2.9 million adult respondents aged ≥18 years with active epilepsy (self-reported doctor-diagnosed epilepsy taking antiseizure medications and/or having ≥1 seizure in the past year) and compared these estimates with 2010 NHIS data. We calculated age-standardized percentages of visits to a general doctor and an epilepsy specialist during the past 12 months, accounting for the complex survey design. Among US adults with active epilepsy in 2017, 27.1% saw a general doctor only, 9.0% saw a neurologist/epilepsy specialist only, 53.0% visited both a general doctor and a neurologist/epilepsy specialist, and 11.4% did not see either a general doctor or a neurologist/specialist. Overall, 62.0% [95% confidence interval (CI) = 55.2%-67.5%] of adults with active epilepsy visited a neurologist or epilepsy specialist in the past year. A visit in the past 12 months with both provider types was not significantly different in 2017 compared with 2010 (53.0% vs 46.2%) while seeing a general doctor only had declined (41.8% vs 27.1%, p < 0.05). Given that 79.8% of US adults with active epilepsy reported being seen by a general doctor within the past 12 months, epilepsy stakeholders have an opportunity to enhance epilepsy care by ensuring that general practitioners have access to the latest information about epilepsy diagnosis and new treatment options. National Health Interview Survey data can be used to track the distribution of provider visits in the coming decade to assess changes in access to primary care, specialty care, or other types of healthcare for people with epilepsy. |
CDC-supported epilepsy surveillance and epidemiologic studies: A review of progress since 1994
Tian N , Croft JB , Kobau R , Zack MM , Greenlund KJ . Epilepsy Behav 2020 109 107123 To report progress, to identify gaps, and to plan epilepsy surveillance and research activities more effectively, the Centers for Disease Control and Prevention (CDC) Epilepsy Program has summarized findings from selected CDC-supported surveillance and epidemiologic studies about epilepsy from 1994 through 2019. We identified publications supported by CDC funding and publications conducted by the CDC Epilepsy Program alone or with partners. We included only epilepsy surveillance and epidemiologic studies focusing on epilepsy burden, epilepsy-related outcomes, and healthcare utilization. We describe the findings of these studies in the following order: 1)prevalence; 2)incidence; 3)epilepsy-related outcomes by selected demographic characteristics; 4)cysticercosis or neurocysticercosis (NCC); 5)traumatic brain injury (TBI); 6)comorbidity; 7)mortality; 8)access to care; 9)quality of care; and 10) cost. We have characterized these findings in relation to the scope of the first three domains of the 2012 Institute of Medicine report on epilepsy and its relevant first four recommendations. From 1994 through 2019, 76 publications on epilepsy-related epidemiologic and surveillance studies were identified. Over the past 25years, CDC has expanded community, state, and national surveillance on epilepsy and supported epidemiologic studies by using multiple assessment methods and validated case-ascertainment criteria to identify epilepsy burden, epilepsy-related outcomes, and healthcare utilization in the general population or in population subgroups. Among identified research opportunities, studies on epilepsy incidence and risk factors, mortality, and cost are considered as important surveillance gaps. Other remaining gaps and suggested surveillance strategies are also proposed. Findings from this review may help epilepsy researchers and other stakeholders reference and prioritize future activities for epidemiologic and surveillance studies in epilepsy. |
Bridging the divide between epilepsy and mental health to drive solutions
Kobau R , Manderscheid R , Owens S , Curt LaFrance WJr , Sajatovic M . Epilepsy Behav 2019 101 106576 Since its establishment in 2000, Epilepsy & Behavior has published more than 1000 papers on mental health issues among people with epilepsy, including about 200 reviews. These studies on prevalence, treatment, and guidance for future research are important contributions to the field, and they offer great promise. Yet these papers and the multitude published in other journals over the years have failed to result in systematic, scaled changes in how the epilepsy field in the United States addresses mental health issues. The mental health assessment and management gap is especially notable given decades-old, as well as more recent, recommendations from national initiatives on epilepsy, consensus statements, and other expert appeals to reduce psychiatric burden. Selected or comprehensive elements of emerging models and latest approaches from behavioral health (e.g., peer support) and public health (e.g., community-clinical linkages) highlight current opportunities to engage multiple community partners and sectors to bridge the epilepsy and behavioral health fields to implement solutions for improved mental healthcare for people with epilepsy. In honor of the 20th anniversary of Epilepsy & Behavior and its contribution to the literature and the field, we seek to build public health roadmaps to bridge the epilepsy and behavioral health divide-with new epilepsy partners who can expand community-based partnerships that may help facilitate systematic changes to close mental health treatment gaps. Special Issue: Epilepsy & Behavior's 20th Anniversary. |
National declines in the percentages of uninsured among adults aged 18-64 years with active epilepsy, 2010 and 2013 to 2015 and 2017 - U.S. National Health Interview Survey
Kobau R , Sapkota S , Koh HK , Zack MM . Epilepsy Behav 2019 97 316-318 Epilepsy is more common among children and adults living in households at lowest incomes. Like those living with any complex chronic condition, people with epilepsy need quality healthcare to improve their health and social outcomes. The purpose of this study was to use the latest national data to provide updated estimates of the percentages of adults aged 18-64years with active epilepsy who were uninsured in 2010, 2013, 2015, and 2017 and to examine changes in health insurance coverage during these years. We analyzed nationally representative samples of adults (aged 18-64years) from the 2010, 2013, 2015, and 2017 National Health Interview Survey (NHIS). We used a validated epilepsy surveillance case definition to classify adults as having active epilepsy during 2010 and 2013 (n=507) and during 2015 and 2017 (n=582). We used the NHIS recode variables available in each year that account for a series of questions posed to respondents to confirm coverage and that ultimately classify respondents with different healthcare coverage types. Overall, the percentage of uninsured adults among respondents aged 18-64years with active epilepsy decreased by more than half (59%), from 17.7% (95% confidence interval [CI]=13.6%-22.7%) in 2010 and 2013 to 7.3% (95% CI=4.8%-10.7%) in 2015 and 2017. The decrease in the percentage of uninsured adults with active epilepsy after 2010 and 2013 was balanced by a similar increase in public insurance coverage and private insurance coverage in 2015 and 2017. Epilepsy stakeholders can ensure that all uninsured adults with epilepsy obtain access to health insurance coverage. National Health Interview Survey data on epilepsy, when available, can be used to monitor trends in insurance status in the new decade. |
Serious psychological distress among adults with active epilepsy in all racial/ethnic groups and among adults with inactive epilepsy in non-Hispanic whites is significantly higher than among adults without epilepsy - U.S. National Health Interview Survey, 2010, 2013, 2015, and 2017
Kobau R , Sapkota S , Zack MM . Epilepsy Behav 2019 95 192-194 Serious psychological distress (SPD) includes mental health problems severe enough to cause moderate-to-serious impairment in daily activities and to require treatment. Serious psychological distress is based on answers to six survey questions from the Kessler-6 scale used internationally in public health surveillance systems to assess recent feelings of sadness, restlessness, hopelessness, nervousness, worthlessness, and the sense that everything is an effort. We combined nationally representative samples in the National Health Interview Survey (NHIS) from 2010 (N=27,157), 2013 (N=34,557), 2015 (N=33,672), and 2017 (N=26,742). We used a validated surveillance case definition to classify adults as having epilepsy if they reported a history of doctor-diagnosed epilepsy or seizure disorder (n=2251). We further classified those with epilepsy as having active epilepsy (n=1380) if they reported either taking epilepsy medications or having at least one seizure in the past 12months or as having inactive epilepsy (n=871) if they did not take epilepsy medication and had not had any seizures in the past 12months. We used an NHIS recoded variable that classifies adults by Hispanic origin and race. Following age adjustment, among adults with active epilepsy, SPD prevalence was 13.7% among non-Hispanic white adults, 11.2% among non-Hispanic black adults, 20.7% among Hispanic adults, and 17.5% among non-Hispanic other adults. Compared with adults without epilepsy, adults with active epilepsy were 4.8 times more likely, and adults with inactive epilepsy 2.6 times more likely, to report SPD. In each racial/ethnic group, SPD among adults with active epilepsy is significantly higher than in adults without epilepsy. Among adults with active epilepsy, SPD prevalence did not differ by racial/ethnic groups. However, only among non-Hispanic white adults with inactive epilepsy did SPD prevalence significantly exceed that among non-Hispanic white adults without epilepsy. Epilepsy stakeholders can use these estimates to target culturally appropriate community-based and clinic-based interventions to reduce the high burden of psychological distress among adults with active epilepsy and inactive epilepsy. |
Close to 1 million US adults aged 55 years or older have active epilepsy - National Health Interview Survey, 2010, 2013, and 2015
Sapkota S , Kobau R , Pastula DM , Zack MM . Epilepsy Behav 2018 87 233-234 Epilepsy is common in older adults because known risk factors-such as traumatic brain injury, stroke, cerebrovascular disease, neurodegenerative disorders, and neoplasms-increase with age. This study uses the most recent data from the 2010, 2013, and 2015 National Health Interview Survey (NHIS) to provide updated national estimates of epilepsy prevalence among US adults aged 55years or older to help guide public health action. We used the following validated surveillance case definition for active epilepsy: adults with self-reported doctor-diagnosed epilepsy or seizure disorder who reported either currently taking medications to treat their epilepsy or seizure disorder or at least one seizure during the past 12months. We estimated the prevalence of active epilepsy to be 1.4% (about 529,000) among US adults aged 55-64, 0.9% (225,000) for those aged 65-74, and 1.0% (178,000) for those aged >/=75years. The prevalence of a history of epilepsy and active epilepsy among adults aged 55-64years was significantly higher than the prevalence in older age groups. Collectively, close to 1 million adults aged 55years or older reported active epilepsy. Epilepsy stakeholders should ensure that older adults with epilepsy have access to age-appropriate clinical preventive services, chronic disease self-management support, specialty care for epilepsy and other comorbidities, and appropriate community services to promote quality of life. |
Active epilepsy and seizure control in adults - United States, 2013 and 2015
Tian N , Boring M , Kobau R , Zack MM , Croft JB . MMWR Morb Mortal Wkly Rep 2018 67 (15) 437-442 Approximately 3 million American adults reported active epilepsy* in 2015 (1). Active epilepsy, especially when seizures are uncontrolled, poses substantial burdens because of somatic, neurologic, and mental health comorbidity; cognitive and physical dysfunction; side effects of antiseizure medications; higher injury and mortality rates; poorer quality of life; and increased financial cost (2). Thus, prompt diagnosis and seizure control (i.e., seizure-free in the 12 months preceding the survey) confers numerous clinical and social advantages to persons with active epilepsy. To obtain recent and reliable estimates of active epilepsy and seizure control status in the U.S. population, CDC analyzed aggregated data from the 2013 and the 2015 National Health Interview Surveys (NHISs). Overall, an annual estimated 2.6 million (1.1%) U.S. adults self-reported having active epilepsy, 67% of whom had seen a neurologist or an epilepsy specialist in the past year, and 90% of whom reported taking epilepsy medication. Among those taking epilepsy medication, only 44% reported having their seizures controlled. A higher prevalence of active epilepsy and poorer seizure control were associated with low family income, unemployment, and being divorced, separated, or widowed. Use of epilepsy medication was higher among adults who saw an epilepsy specialist in the past year than among those who did not. Health care and public health should ensure that adults with uncontrolled seizures have appropriate care and self-management support in order to promote seizure control, improve health and social outcomes, and reduce health care costs. |
People with epilepsy are diagnosed most often with unspecified epilepsy, followed by focal epilepsy, generalized convulsive epilepsy, and generalized nonconvulsive epilepsy - US MarketScan data, 2010-2015
Sapkota S , Kobau R , Pastula DM , Zack MM . Epilepsy Behav 2017 79 244-246 The distribution of epilepsy types varies by age, etiology, provider diagnostic capabilities, and assessment criteria. No recent US study has examined the distribution of epilepsy types in a large, population-based sample of people with epilepsy. We used MarketScan data from January 1, 2010 through September 30, 2015, to estimate the proportion of epilepsy types among all (N=370,570) individuals diagnosed with epilepsy. We identified cases of epilepsy as individuals with at least one International Classification of Disease, 9th version (ICD-9) diagnostic code of 345.X and the use of at least one antiseizure drug described in the 2015 MarketScan Redbook. Unspecified epilepsy was more common (36.8%) than focal-localized epilepsy (24.6%), generalized convulsive epilepsy (23.8%), generalized nonconvulsive epilepsy (8.9%), other forms of epilepsy (5.2%), infantile spasm (0.3%), and epilepsia partialis continua (0.3%). The high proportion of epilepsy classified as unspecified might be lowered by improved training in epilepsy diagnosis and coding. |
National and state estimates of the numbers of adults and children with active epilepsy - United States, 2015
Zack MM , Kobau R . MMWR Morb Mortal Wkly Rep 2017 66 (31) 821-825 Epilepsy, a brain disorder leading to recurring seizures, has garnered increased public health focus because persons with epilepsy experience pronounced and persistent health and socioeconomic disparities despite treatment advances, public awareness programs, and expanded rights for persons with disabilities. For almost all states, epilepsy prevalence estimates do not exist. CDC used national data sources including the 2015 National Health Interview Survey (NHIS) for adults (aged ≥18 years), the 2011-2012 National Survey of Children's Health (NSCH), and the 2015 Current Population Survey data, describing 2014 income levels, to estimate prevalent cases of active epilepsy, overall and by state, to provide information for state public health planning. In 2015, 1.2% of the U.S. population (3.4 million persons: 3 million adults and 470,000 children) reported active epilepsy (self-reported doctor-diagnosed epilepsy and under treatment or with recent seizures within 12 months of interview) or current epilepsy (parent-reported doctor-diagnosed epilepsy and current epilepsy). Estimated numbers of persons with active epilepsy, after accounting for income and age differences by state, ranged from 5,900 in Wyoming to 427,700 in California. NHIS data from 2010-2015 indicate increases in the number of persons with active epilepsy, probably because of population growth. This study provides updated national and modeled state-specific numbers of active epilepsy cases. Public health practitioners, health care providers, policy makers, epilepsy researchers, and other epilepsy stakeholders, including family members and people with epilepsy, can use these findings to ensure that evidence-based programs meet the complex needs of adults and children with epilepsy and reduce the disparities resulting from it. |
Adults with an epilepsy history fare significantly worse on positive mental and physical health than adults with other common chronic conditions - Estimates from the 2010 National Health Interview Survey and Patient Reported Outcome Measurement System (PROMIS) Global Health Scale
Kobau R , Cui W , Zack MM . Epilepsy Behav 2017 72 182-184 Healthy People 2020, a national health promotion initiative, calls for increasing the proportion of U.S. adults who self-report good or better health. The Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health Scale (GHS) was identified as a reliable and valid set of items of self-reported physical and mental health to monitor these two domains across the decade. The purpose of this study was to examine the percentage of adults with an epilepsy history who met the Healthy People 2020 target for self-reported good or better health and to compare these percentages to adults with history of other common chronic conditions. Using the 2010 National Health Interview Survey, we compared and estimated the age-standardized prevalence of reporting good or better physical and mental health among adults with five selected chronic conditions including epilepsy, diabetes, heart disease, cancer, and hypertension. We examined response patterns for physical and mental health scale among adults with these five conditions. The percentages of adults with epilepsy who reported good or better physical health (52%) or mental health (54%) were significantly below the Healthy People 2020 target estimate of 80% for both outcomes. Significantly smaller percentages of adults with an epilepsy history reported good or better physical health than adults with heart disease, cancer, or hypertension. Significantly smaller percentages of adults with an epilepsy history reported good or better mental health than adults with all other four conditions. Health and social service providers can implement and enhance existing evidence-based clinical interventions and public health programs and strategies shown to improve outcomes in epilepsy. These estimates can be used to assess improvements in the Healthy People 2020 Health-Related Quality of Life and Well-Being Objective throughout the decade. |
Enhanced epilepsy surveillance and awareness in the age of Zika
Pastula DM , Yeargin-Allsopp M , Kobau R . JAMA Neurol 2017 74 (6) 631-632 Zika virus (ZIKV) is a flavivirus transmitted primarily through the bite of an infected mosquito, through sexual activity without a condom, and probably through blood transfusion and exposure to other bodily fluids.1 Prior to 2015, ZIKV disease outbreaks occurred in areas of Africa, Southeast Asia, and the Pacific Islands. Since 2015, out- breaks have occurred in the Americas.1 In general, ZIKV infection produces no clinical symptoms in many individuals or a mild, self-limiting illness characterized by rash, fever, myalgia, arthralgia, headaches, and/or non- purulent conjunctivitis.1 | However, congenital ZIKV infection has been established as a cause of microcephaly and other severe brain anomalies.2 Clinically, craniofacial disproportion, irritability, hypertonia, hemiparesis, extrapyramidal movements (eg, dystonia and dyskinesias), dysphagia, arthrogryposis, clubfeet, and chorioretinal defects have all been reported in ZIKV-exposed infants.3,4 Radiographically, decreased brain volume, intracerebral calcifications, diffuse cortical malformation and atrophy, ventriculomegaly, white matter attenuation, and/or cerebellar and brainstem hypoplasia have also been described.3,4 Pathologically, ZIKV appears to target human neural progenitor cells, causing increased cell death and cell-cycle dysregulation, which is thought to disrupt neuronal development and migration.5 |
Epilepsy by the numbers: Epilepsy deaths by age, race/ethnicity, and gender in the United States significantly increased from 2005 to 2014
Greenlund SF , Croft JB , Kobau R . Epilepsy Behav 2017 69 28-30 To inform public health efforts to prevent epilepsy-related deaths, we used the Centers for Disease Control and Prevention Wide-ranging Online Data for Epidemiologic Research (WONDER; Wonder.cdc.gov) to examine any-listed epilepsy deaths for the period 2005-2014 by age groups (≤24, 25-44, 45-64, 65-84, ≥85years), sex, and race/ethnicity (non-Hispanic White, non-Hispanic African American, Hispanic, Asian/Pacific Islander, or American Indian/Alaska Native). Epilepsy deaths were defined by the International Classification of Diseases, Tenth Revision (ICD-10) codes G40.0-G40.9. The total number of deaths per year with epilepsy as any listed cause ranged from 1760 in 2005 to 2962 in 2014. Epilepsy was listed as the underlying cause of death for about 54% of all deaths with any mention of epilepsy in 2005 and for 43% of such deaths in 2014. Age-adjusted epilepsy mortality rates (as any-listed cause of death) per 100,000 significantly increased from 0.58 in 2005 to 0.85 in 2014 (47% increase). In 2014, deaths among the non-Hispanic Black population (1.42 deaths per 100,000) were higher than among non-Hispanic White (0.86 deaths per 100,000) and Hispanic populations (0.70 deaths per 100,000). Males had a higher mortality rate than females (1.01 per 100,000 versus 0.74 per 100,000 in 2014), and those aged 85years or older had the highest mortality among age groups. Results highlight the need for heightened action to prevent and monitor epilepsy-associated mortality. |
The Managing Epilepsy Well Network: Advancing epilepsy self-management
Sajatovic M , Jobst BC , Shegog R , Bamps YA , Begley CE , Fraser RT , Johnson EK , Pandey DK , Quarells RC , Scal P , Spruill TM , Thompson NJ , Kobau R . Am J Prev Med 2017 52 S241-s245 Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people's homes, healthcare providers' offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline, which spans efficacy, effectiveness, and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities, which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 43 scientific journal articles, two study reports, seven book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation, state Epilepsy Foundation affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact. |
The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality.
Burns KM , Bienemann L , Camperlengo L , Cottengim C , Covington TM , Dykstra H , Faulkner M , Kobau R , Erck Lambert AB , MacLeod H , Parks SE , Rosenberg E , Russell MW , Shapiro-Mendoza CK , Shaw E , Tian N , Whittemore V , Kaltman JR . Pediatrics 2017 139 (3) Knowledge gaps persist about the incidence of and risk factors for sudden death in the young (SDY). The SDY Case Registry is a collaborative effort between the National Institutes of Health, the Centers for Disease Control and Prevention, and the Michigan Public Health Institute. Its goals are to: (1) describe the incidence of SDY in the United States by using population-based surveillance; (2) compile data from SDY cases to create a resource of information and DNA samples for research; (3) encourage standardized approaches to investigation, autopsy, and categorization of SDY cases; (4) develop partnerships between local, state, and federal stakeholders toward a common goal of understanding and preventing SDY; and (5) support families who have lost loved ones to SDY by providing resources on bereavement and medical evaluation of surviving family members. Built on existing Child Death Review programs and as an expansion of the Sudden Unexpected Infant Death Case Registry, the SDY Case Registry achieves its goals by identifying SDY cases, providing guidance to medical examiners/coroners in conducting comprehensive autopsies, evaluating cases through child death review and an advanced review by clinical specialists, and classifying cases according to a standardized algorithm. The SDY Case Registry also includes a process to obtain informed consent from next-of-kin to save DNA for research, banking, and, in some cases, diagnostic genetic testing. The SDY Case Registry will provide valuable incidence data and will enhance understanding of the characteristics of SDY cases to inform the development of targeted prevention efforts. |
- Page last reviewed:Feb 1, 2024
- Page last updated:Dec 09, 2024
- Content source:
- Powered by CDC PHGKB Infrastructure