"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 M, Epilepsy & Behavior, 95 (2019): 192-194.

Epilepsy can be both a chronic and unpredictable illness for many people. As a result, it may affect a person in different ways, including their physical, psychological and social wellbeing. Psychological disorders are more common in people with epilepsy than people without epilepsy. Serious psychological distress (SPD) is a sign of mental health problems that cause a person to have significant difficulty in their day-to-day function and may also require treatment.


The purpose of this study was to better understand how frequently people with active or inactive epilepsy, as well as people in different racial/ethnic groups, were impacted by SPD.

Description of Study

This study used information that was gathered from 122,000 adults across the United States in the National Health Interview Survey (NHIS). This study combined information from NHIS over different years (2010, 2013, 2015, 2017). SPD was evaluated using a measurement tool (Kessler 6-scale) that asked people about their recent feelings of sadness, restlessness, hopelessness, nervousness, worthlessness, and the sense that everything is an effort.

  • The study identified 2,251 adults as having epilepsy based on a diagnosis provided by a doctor.
  • People were included in the active epilepsy group if they reported either taking epilepsy medications or having at least one seizure in the past 12 months.
  • People were included in the inactive epilepsy group if they did not take epilepsy medication and had not had any seizures in the past 12 months.
  • Additionally, people included in the study were placed into one of the following racial/ethnic groups:
    • Non-Hispanic whites
    • Non-Hispanic blacks
    • Hispanics
    • Non-Hispanics of other races
  • An analysis of the data was used to estimate how common SPD was in each group (active epilepsy, inactive epilepsy). It was then compared to survey participants with no epilepsy history.

Summary of Study Findings

SPD is more common in active epilepsy.

  • During 2010-2017, SPD was found to be present in about:
    • 14 out of 100 adults with active epilepsy
    • 9 out of 100 adults with inactive epilepsy
    • 3 out of 100 adults with no epilepsy
  • Adults with active epilepsy were almost 5 times more likely to report SPD than people with no epilepsy.
  • Adults with inactive epilepsy were about 3 times more likely to report SPD than people with no epilepsy.
  • For each racial/ethnic group included in the study, SPD among people with active epilepsy was found to be significantly higher than in adults with no epilepsy.

SPD in active epilepsy is not significantly more common in any racial/ethnic group.

  • In adults with active epilepsy, SPD was present in about:
    • 14% of non-Hispanic white adults
    • 11% of non-Hispanic black adults
    • 20% of Hispanic adults
    • 17% of other racial/ethnic adults (non-Hispanic)
  • In adults with active epilepsy, SPD was not significantly different for racial/ethnic groups.

SPD in inactive epilepsy is more commonly seen in non-Hispanic white adults.

  • Only in non-Hispanic white adults with inactive epilepsy was SPD significantly more common than in non-Hispanic white adults with NO epilepsy.

What does this mean?

  • This study supports that adults affected by epilepsy (active or inactive) are more likely to have SPD.
  • SPD presents a higher burden among adults who have been diagnosed with epilepsy and among all racial/ethnic groups.
  • Culturally appropriate clinic- and community-based mental health screening, treatment, and support strategies may help reduce the hardship of SPD among adults with active epilepsy and inactive epilepsy.
  • The high rates of SPD, even in people with inactive epilepsy, suggest that epilepsy can have long-term effects on mental health, even after seizures and anti-seizure medications have stopped.
  • Additional research that considers epilepsy related and social factors may help better identify people who are at the highest risk for developing SPD.

Article published in Epilepsy & Behavior, June 2019.

Authored By: 
Elaine Kiriakopoulos MD, MSc
Authored Date: 
Reviewed By: 
Elaine Wirrell MD
Andres M. Kanner MD
Sunday, June 16, 2019