Meriem Bensalem-Owen, MD, FANA, FACNS, is the director of the UK Epilepsy Program and the treasurer and secretary for National Association of Epilepsy Centers. Here, she talks about treating epilepsy and the different levels of care.
Meriem Bensalem-Owen, MD, FANA, FACNS
Director, UK Epilepsy Program
What are the different levels of epilepsy care?
Despite the development of several new anti-seizure medications or antiepileptic drugs over the past couple of decades, approximately 30 to 40 percent of patients remain refractory, or resistant to medical treatment. (Note: refractory epilepsy is also referred to as intractable, drug-resistant, or uncontrolled.)
In addition to the burden of having seizures, mortality in epilepsy is a major public health concern. A recent study found a clear benefit of the care provided by a neurologist specializing in epilepsy, also referred to as an epileptologist, in relation to mortality outcomes.
Managing individuals with medically refractory epilepsy can be challenging and complex and requires a multidisciplinary team and approach offered in epilepsy centers.
The National Association of Epilepsy Centers (NAEC) has defined four levels of care and accredits epilepsy centers through a rigorous process that provide level 3 and 4 care. These four levels of care are quoted directly from NAEC:
“Level 1 epilepsy care typically occurs at an emergency room or a primary care physician’s office with an epilepsy evaluation.
Level 2 epilepsy care involves a consultation with a general neurologist. This consultation may occur at a specialized epilepsy center.
Levels 3 and 4 care takes place at specialized epilepsy centers.
All epilepsy centers listed in NAEC’s directory have completed the NAEC accreditation process.”
When is time to ask for a second opinion when it comes to treatment for epilepsy?
In an effort to improve the quality of care delivered to epilepsy patients with an ultimate focus on improving outcomes, the American Academy of Neurology (AAN) developed quality measures, also known as metrics. One of the measures includes referral to a comprehensive epilepsy center. The NAEC website also provides guidelines for such referrals as well as a map for the closest epilepsy centers in one’s region.
Physicians or any health providers should consider referring their patients to an epilepsy center if seizures continue despite treatment for more than one year. This treatment should include a trial of at least two anti-seizure medications, also known as anti-epileptic drugs (AEDs).
There are other situations where individuals should seek care in an epilepsy center. Women of childbearing potential who are planning to conceive or are already pregnant should be referred to an epilepsy specialist, as should patients experiencing side effects from their medications affecting their daily life. Epileptologists received special training for these particular situations. Physicians or healthcare providers caring for epilepsy patients with sub-optimally controlled seizures should consider referral to epilepsy specialists.
Adults or parents of children diagnosed with epilepsy who have uncontrolled seizures should not feel any hesitation or guilt about seeking a second opinion. Patients and parents of epilepsy children can find a tab on the NAEC website labeled “My Seizures Know More Tool” with six questions about seizure control.
We encourage our patients to be informed and take an active part in their healthcare. Being formally evaluated at an epilepsy center is an important part of that process. Achieving seizure freedom, with minimal or no side effects from treatment, is priceless.
How can caregivers best prepare for a visit with an NAEC accredited center?
Before the initial appointment, the Level 4 accredited NAEC center provides an epilepsy focused questionnaire to patients and caregivers. This questionnaire helps gather pertinent information. Additionally, our coordinator obtains records and reports of prior tests from referring physicians’ or healthcare providers’ offices before the office visit.
The following are few tips to help prepare patients and/or their caregivers for the appointment:
- Define the expectations of the visit.
- Make a focused list of questions and concerns to be brought up or discussed.
- Be prepared to describe the seizure(s) or events(s) of concern, including duration and frequency.
- Some individuals may share a video (frequently taken on cell phones) of the seizures; otherwise we rely on witnesses’ description of the seizures.
- Know potential epilepsy risk factors or seizure-triggers, if any.
- Bring records of prior testing such as electroencephalogram (EEG), video-EEG studies, and brain imaging (MRI or CT scan).
- Bring up special considerations, such as family planning.
- Inquire about community resources, including support groups and Epilepsy Foundation affiliates.
- Take notes during the visit.