R.E. Bautista. Epilepsy Behav, 2017; 69:7-11.


Living with epilepsy and following treatment recommendations can vary immensely, depending upon each person’s experiences and needs. People with well controlled epilepsy that has little impact on their daily life will have different needs and ways of coping than those who have uncontrolled seizures.

Treating seizures requires that the person with epilepsy or their family or caregiver be involved and know what to do, when to take action, and how to do it. This may involve taking medicines, getting tests done, knowing risks and taking safety precautions, or managing their lifestyle. Lifestyle modifications may be needed to avoid seizure triggers, follow specific dietary suggestions, manage stress, and stay fit and healthy.

Epilepsy self-management is the term used to describe the steps a person takes to manage their seizures and epilepsy and the impact on their daily life.

Description of Study

This study was done at an epilepsy center in Florida. The authors surveyed adults with epilepsy using the first version of the epilepsy self management scale (ESMS). This scale included areas about managing seizures, medications, safety, lifestyle, and information.

Summary of Study Findings

  • 172 adults completed the ESMS scale
  • The average age when seizures began was 22 years old and participates had seizures for an average 21 years.
  • Most people were still having seizures and only 27% had less than one seizure a year. Almost all (95%) were taking seizure medicine.
  • Most people scored higher on items that involved managing medications, seizures, and safety.
  • Managing lifestyle and information scored lower.

What does this mean?

  • Higher scores on managing medications, seizures, and safety suggest that people are taking steps to manage these areas more often than they are takin action to address lifestyle or information.
  • These results could mean that health care providers teach or counsel people about seizures, medicines, and safety more often.
  • Results could also mean that changing one’s lifestyle, learning how to talk about their epilepsy, and managing or recording complex information is more difficult and takes different skills.

This article stresses that self management needs do vary. Attention is needed in key areas that affect general health and wellness and that can affect seizure control as well.           

The ESMS scale has been updated and incorporates more self-management behaviors. The new scale for adults (AESMMI) includes more attention to lifestyle, communication, and stigma.

Article published in Epilepsy & Behavior, March 2017.

Authored By: 
Patty Obsorne Shafer RN, MN
Authored Date: 
Reviewed By: 
Christianne N. Heck MD, MMM
Joseph I. Sirven MD
Tuesday, April 4, 2017