The National Association of Epilepsy Centers (NAEC) describes four levels of epilepsy care, which are outlined in the Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers in the United States. Healthcare providers, and patients alike, can utilize the system to help determine the appropriateness of epilepsy care based on their needs.
Let’s look at the different levels of epilepsy treatment to get a better understanding of exactly what these levels are and when they are needed.
In this level, the patient is generally seen at the primary care physician’s office for an epilepsy evaluation, or care at an emergency room for a seizure. Typically, the patient is referred to Level 2 care so they can get the specialized help they may need. Just because you experienced a seizure does not mean you have epilepsy.
This is when the patient has a consultation with a general neurologist, which may happen at an epilepsy center or in the neurologist’s office.
Many people, if not most, will never need to go beyond Level 1 or Level 2, and that usually because the patient’s:
- Personalized treatment plan is effective.
- Seizures are under control.
- Test results reveal that they do not have epilepsy, they have something else.
Level 3 care are specialized centers where patients with uncontrolled or refractory seizures can receive basic medical services, psychosocial and neuropsychological services. Some of the centers that offer Level 3 care are also capable of providing noninvasive evaluation for epilepsy surgery, basic respective surgeries, EEG tests and the implantation of the vagus nerve stimulator (VNS). However, they cannot provide complex epilepsy surgery or intracranial evaluations.
Level 4 is care centers are highly specialized and offer the most advanced and extensive care and treatment. Patients can receive testing in epilepsy monitoring units or EMUs, complete evaluations for surgery, and the centers can perform complex types of surgery that other facilities are unable to match.
According the NAEC guidelines, patients should be referred to Level 3 or 4 centers in instances where the seizures have not been brought under control after seeing a general neurologist for 12 months. If your seizures are uncontrolled it is important that you take steps to ensure you receive the proper care to see an epileptologist, a doctor that specializes in epilepsy.
According to epileptologist, Selim R. Benbadis, MD, 30% of all patients seen in the EMU do not have epilepsy. They have been misdiagnosed and have something else! Just because you’ve had a seizure does not mean you have epilepsy. Read about common misdiagnoses in our blog, The Misdiagnosis of Epilepsy: 10 Conditions That Mimic Epilepsy.
Both Levels 3 and 4 are capable of providing a complementary and interdisciplinary approach to care. This allows multiple teams to work together to help the patient. The goals of care at Levels 3 and 4 are to either control seizures or reduce the frequency of seizures.
To locate an Epilepsy Level 3 or Level 4 care center nearest to you, you may go to the NAEC site, enter your zip code and a list will immediately populate.
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