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.
•We used NHIS data to examine past 12-month provider visits for adults with epilepsy.•In 2017, 62% of adults visited a neurologist or epilepsy specialist in the past year.•In 2017, 27% of US adults with epilepsy saw a general doctor only.•In 2017, 11% of adults did not see either a general doctor or a neurologist/specialist.•Past 12-month visits with both provider types were the same in 2017 as in 2010.
Abstract 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.
Purpose: To examine the prevalence of self‐reported epilepsy or seizure disorder and its association with self‐reported recent depression and anxiety in a large sample of the U.S. adult population.
...Methods: We analyzed data from adults aged 18 years or older (n = 4,345) who participated in the 2004 HealthStyles Survey, a large mail panel survey designed to be representative of the U.S. population.
Results: Among U.S. adults aged 18 years or older, we estimated that 2.9% have been told by a doctor that they had epilepsy or seizure disorder, and an estimated 1.6% and 0.9% had active and inactive epilepsy, respectively. After controlling for demographic characteristics, we estimated that adults with self‐reported epilepsy were twice as likely to self‐report depression or anxiety in the previous year as were adults without epilepsy, and adults with active epilepsy were 3 times as likely to self‐report depression and twice as likely to have anxiety in the previous year as were adults without epilepsy.
Conclusions: Our findings highlight the burden of self‐reported depression and anxiety among adults with self‐reported epilepsy or seizure disorder, and suggest that healthcare providers should attempt to determine whether adult patients with epilepsy have any psychiatric comorbidity potentially to improve health outcomes. Questions about epilepsy and related factors should be routinely included on population‐based surveys so that we can better understand the epilepsy distribution in the U.S. population and identify the unmet health and psychosocial needs of people with epilepsy.
•43,231 U.S. deaths listed epilepsy as a cause of death during 2011–2021.•39% listed epilepsy as the underlying and 61% as a contributing cause of death.•Age-adjusted epilepsy mortality rates ...significantly increased during 2011–2021.•Epilepsy mortality rates differed by age, sex, and racial/ethnic subgroups.•Epilepsy mortality rates also differed by geographic region and urban-rural status.
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.
•Primary care providers care for many people with epilepsy and need regular training.•Extension for Community Healthcare Outcomes is a telementoring program that assists PCPs in select areas of ...specialized care.•Twenty webinar sessions over 2 years covered epilepsy and other neurological topics.•One-hundred and sixty four individuals participated live; archived presentations were viewed 212 times.•Ninety-eight percentage of respondents reported greater interest and comfort in epilepsy treatment.
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.
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.
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.
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.
•Primary care providers’ (PCPs) referrals to neurologists differed by PCPs and epilepsy caseload.•56% of PCPs referred to neurologists if seizures of their patient failed to respond to treatment.•64% ...of PCPs referred to neurologists if their patient’s seizure activity changed.•Prompt appointments were an enabling factor for referral for 41% of PCPs.•Talking with a neurologist first was an enabling factor for referral for 37% of PCPs.
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.
Mood disorders are a major public health problem in the United States as well as globally. Less information exists however, about the health burden resulting from subsyndromal levels of depressive ...symptomatology, such as feeling sad, blue or depressed, among the general U.S. population.
As part of an optional Quality of Life survey module added to the U.S. Behavioral Risk Factor Surveillance System, between 1995-2000 a total of 166,564 BRFSS respondents answered the question, "During the past 30 days, for about how many days have you felt sad, blue, or depressed?" Means and 95% confidence intervals for sad, blue, depressed days (SBDD) and other health-related quality of life (HRQOL) measures were calculated using SUDAAN to account for the BRFSS's complex sample survey design.
Respondents reported a mean of 3.0 (95% CI = 2.9-3.1) SBDD in the previous 30 days. Women (M = 3.5, 95% CI = 3.4-3.6) reported a higher number of SBDD than did men (M = 2.4, 95% CI = 2.2-2.5). Young adults aged 18-24 years reported the highest number of SBDD, whereas older adults aged 60-84 reported the fewest number. The gap in mean SBDD between men and women decreased with increasing age. SBDD was associated with an increased prevalence of behaviors risky to health, extremes of body mass index, less access to health care, and worse self-rated health status. Mean SBDD increased with progressively higher levels of physically unhealthy days, mentally unhealthy days, unhealthy days, activity limitation days, anxiety days, pain days, and sleepless days.
Use of this measure of sad, blue or depressed days along with other valid mental health measures and community indicators can help to assess the burden of mental distress among the U.S. population, identify subgroups with unmet mental health needs, inform the development of targeted interventions, and monitor changes in population levels of mental distress over time.
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.
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.
In collaboration with its partners in the public health and aging services communities, the Centers for Disease Control and Prevention (CDC) Health Care and Aging Studies Branch has developed and ...validated a brief set of health-related quality of life (CDC HRQOL) measures for tracking the perceived physical and mental health of adults over time. For the past 12 years, these measures -- also called the Healthy Days measures -- have been used in an expanding set of population health surveys, surveillance systems, performance report cards, and evaluation studies, and they have provided useful disease and disability burden data to inform decision making and provide new insights for prevention research. Although now used continuously to assess health-related quality of life for Americans aged 12 years and older, the measures and population data have been especially valuable in applications affecting older adults, for which health-related quality of life is an outcome of primary importance. The CDC HRQOL measures are recommended to public health and social service professionals as a feasible way to assess perceived physical and mental health needs of older adults and to document the effects of policies and interventions.
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