Approximately 3.4 million American adults — or 1.2% of the population — had active epilepsy in 2015, new data show, up from 2.3 million adults in 2010.
The new study controlled for age and income, so the increase is likely due to population growth over the past decade, or to such factors as increased willingness to disclose having epilepsy, note coauthors Matthew M. Zach, MD, and Rosemarie Kobau, MPH, Division of Population Health, Centers for Disease Control and Prevention (CDC).
This is the first time that estimates were available for all states, the authors note.
“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,” they write.
The study was published online August 9 in the CDC’s Morbidity and Mortality Weekly Report.
To estimate the prevalence of epilepsy among adults, the authors used the 2015 Sample Adult component of the National Health Interview Survey (NHIS), an annual cross-sectional household survey of the civilian, noninstitutionalized US population. Adults classified as having “active epilepsy” reported a history of doctor-diagnosed epilepsy and were taking medication to control it and/or had had one or more seizures during the past year.
Validation of survey questions for surveillance of active epilepsy yielded a sensitivity exceeding 80% and specificity exceeding 99%. There was also a positive predictive value of 74%, which is similar to validation estimates seen in surveillance of other chronic disorders. Only 0.07% of adults in 2015 declined to answer or did not know whether they had doctor-diagnosed active epilepsy.
Childhood Prevalence
To estimate epilepsy prevalence among children, the authors analyzed data from the 2011–2012 National Survey of Children’s Health, a cross-sectional telephone survey of households with at least one child.
This survey asks parents or guardians if a healthcare provider ever told them their child had epilepsy or a seizure disorder and, if so, if their child currently has epilepsy or seizure disorder. Only 0.03% of parents or guardians declined to answer or did not know.
In 2015, 1.2% (95% confidence interval, 1.1 – 1.4) of the US population was classified as having active epilepsy (3.4 million: 3 million adults and 470,000 children).
This is an increase from an estimated 2.3 million adults in 2010 and 450,000 children in 2007, the report notes.
For income levels, the authors used the 2015 Current Population Survey data that described 2014 income levels. They calculated the prevalence of active epilepsy for three age groups (0 to 17 years, 18 to 64 years, and ≥65 years) stratified by three family income groups: 0% to 99%, 100% to 199%, and 200% or greater of poverty thresholds.
State Estimates
To determine state-level estimates of active epilepsy, the researchers multiplied the age- and income-specific active epilepsy prevalence estimates by the population estimates for each of the age and income groups.
Among adults, the estimated number of cases of active epilepsy ranged from 5100 in Wyoming to 367,900 in California. For children, the estimated number of cases of epilepsy ranged from 800 in Wyoming to 59,800 in California.
“The number of prevalent cases of active epilepsy by state generally mirrors the states’ population distribution,” said the report.
The authors note that the prevalence estimates may be underestimated because they depended on self-reports. Perceived repercussions in disclosing epilepsy include stigma or driver’s license restrictions, and the exclusion of institutionalized adults may have affected the estimates.
Stigma Still a Concern
People of all ages and racial and ethnic groups can develop epilepsy, and they often have multiple co-occurring conditions, including stroke, heart disease, depression, or developmental delay. Children with epilepsy are more likely to live in poverty.
An “At a Glance 2017” document, also released by the CDC, suggests that many people with epilepsy are not receiving proper care. Analysis of 2010 and 2013 data from the NHIS found that about 39% of adults who experienced seizures in the past year had not seen a neurologist.
In addition, individuals with active epilepsy have more difficulty getting dental, mental, and other healthcare services than those without epilepsy.
Stigma also continues to be an issue for those with epilepsy. In 2013, 12% of US adults said they would avoid a person who has frequent seizures.
More Awareness
“We hope the CDC’s finding about epilepsy prevalence among Americans will bring more attention and awareness to this disease,” Eli Mizrahi, MD, president of the American Epilepsy Society and chair of the Department of Neurology, Baylor College of Medicine, told Medscape Medical News when asked for comment.
While epilepsy can usually be treated effectively, it presents in many different ways, he said. Even healthcare professionals may not recognize its symptoms, resulting in delays in diagnosis, effective treatment, and referral to a specialist or epilepsy treatment center when needed.
“This report proves the necessity of our work partnering with CDC and other organizations to provide educational resources and help bridge this information gap about epilepsy,” said Dr Mizrahi.
The authors have disclosed no relevant financial relationships.
MMWR Morb Mortal Wkly Rep. Published online August 11, 2017. Full textt
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