Living with epilepsy may be straightforward for some people. If seizures can be easily controlled and no side effects happen, they may have little effect on their daily life.

But for others, seizures can wreak havoc.

  • It can affect a person’s safety in many ways. Family and friends need to learn what to do and what NOT to do when a seizure occurs.
  • Safety in your environment needs to be considered – do changes in your home, work, or other areas need to be made?
  • What about driving? Most states require that a person is seizure free for a period of time before they can drive. If an adult depends on driving to get to work and care for their family, what do they do?
  • Will work be affected? Can you still do the same job or would a different type of job be better? People who need to drive as part of their job responsibilities may need to consider job changes and retraining.

Managing epilepsy involves helping people address all these issues and more. It’s thinking about how you stay healthy, manage medicines, continued seizures, seizure triggers, and medical tests. But is’t also about living with epilepsy and getting the right help.

How Do I Get Quality Care?

So you’ve been diagnosed with epilepsy. Do you know what type of care you should get? How would you know if it’s ‘good’ care? What should you do when you're first diagnosed?

Finding quality care can be hard. You may not have many options, depending on where you live or what type of insurance you have. Yet when you are seeing a health care provider, it’s important to make sure you get as much information as possible and that your health care team is listening to you and involving you in your care. You are the center of your team — since you are the one living with the epilepsy.

The medical community has identified some ways to measure if a person is getting quality care for epilepsy. While these don’t measure everything, they highlight important areas that everyone should pay attention to.

  • If you are caring for people with epilepsy, think about these measures and how you can use them in your practice.
  • If you have epilepsy or care for someone with epilepsy, know what the quality measures are. Ask the health care providers about these topics if they aren’t brought up with you at appointments.

What Are Quality Measures for Epilepsy Care?

At each epilepsy visit:

  • Has seizure frequency and ways to reduce seizures been talked about?
  • Has the etiology or cause, seizure type or epilepsy syndrome been addressed?
  • Have side effects of treatment been discussed? Have ways to lessen side effects been considered?
  • Are there any psychiatric or behavioral problems?

At least once a year:

Every 2 years:

  • Has the person whose seizures are not controlled been referred to an epilepsy center?

For more information:

Authored By: 
Patty Obsorne Shafer RN, MN
Authored Date: 
Reviewed By: 
Epilepsy Foundation Communications
Wednesday, July 21, 2021