Recommended Guidelines for Diagnosis and Treatment

in

Specialized Epilepsy Centers

This was published in Epilepsia, the Journal of the International League Against Epilepsy Volume 31, Supplement 1, 1990.
Prepared by The National Association of Epilepsy Centers
Please direct inquiries about the Guidelines or the Association to: Robert J. Gumnit, M.D., President, National Association of Epilepsy Centers, 5775 Wayzata Boulevard, Minneapolis, MN 55416. Telephone (612)525-1160.

Introduction

The National Association of Epilepsy Centers has established as one of its foremost objectives the development of guidelines for the services, personnel, and facilities appropriate for specialty epilepsy centers. The Guidelines also include recommendations for referral of patients to such centers. Following many months of work and discussion by committee members from epilepsy centers across the United States, the following document was developed.

These Guidelines are intended to assist existing and developing epilepsy centers and purchasers of services in evaluating appropriateness and quality of care. A comprehensive approach to the care of patients with intractable seizures is the most compassionate, medically appropriate, and cost-effective approach. Naturally, differences will exist among epilepsy centers in the range of services provided. These Guidelines seek to establish basic definitions of the scope and quality of services that any specialty epilepsy center should achieve.

A specialty epilepsy center is a program providing comprehensive diagnostic and treatment services primarily or exclusively to patients with intractable epilepsy - that is, patients whose seizures have not been brought under acceptable control using the resources available to the family physician or general neurologist. Such a program is staffed by physicians, nurses, technologists, psychologists, and others with specialized training and experience in the field. "Tertiary-level" medical centers should provide the basic range of medical, neuropsychological, and psychosocial services needed in an epilepsy referral center. Surgical services are generally not provided except on a referral or emergency basis. Eventually, tertiary-level centers will be found in many university and some large community hospitals.

"Fourth-level" medical epilepsy centers serve as regional or national referral facilities, providing services to millions of people. These centers should provide the more complex forms of intensive neurodiagnostic monitoring (INDM) and other diagnostic procedures, more extensive neuropsychological and psychosocial services, and limited neurosurgical services for epilepsy treatment. A more sophisticated staffing mix should also be found in a fourth-level center.

A "fourth-level" surgical epilepsy center should be capable of conducting complete surgical evaluations, as well as having staff with the expertise to perform a broad range of surgical procedures for epilepsy. A fourth level center may consist of separate medical and surgical programs, or there may be one combined medical and surgical program.

It is important that these highly specialized resources be used appropriately. Although they are not needed routinely by the majority of the patients with epilepsy, they must be available to those whose epilepsy cannot be effectively treated at the primary- or secondary-care level. Early intervention is most likely to achieve the best results, and these services should be provided to the appropriate patients without undue delay.

This document was developed by the members of the Medical Diagnosis and Treatment Committee and the Surgical Treatment Committee of the National Association of Epilepsy Centers, and was adopted by the Board of the National Association of Epilepsy Centers on April 14, 1989. The Guidelines may be reviewed and updated as considered necessary by the Board.

I. Tertiary-Level Epilepsy Referral Center

A. SERVICES PROVIDED

1. Electrodiagnostic
a) A minimum of 8-hour video/electroencephalogram (EEG) with surface/sphenoidal recording with supervision by EEG technologist and assistance by epilepsy staff nurse or monitoring technician if necessary
2. Epilepsy surgery
a) Emergency or elective neurosurgery, including removal of incidental lesions (e.g., tumors, hematomas)
b) Management of complications
c) An established referral agreement with a fourth-level epilepsy surgical center for surgical procedures for epilepsy, when indicated
3. Imaging
a) Magnetic resonance imaging
b) Computerized axial tomography
c) Cerebral angiography
4. Pharmacological expertise
a) Quality-assured antiepileptic drug levels
b) 24-hour antiepileptic drug level service
c) Pharmacokinetics expertise by at least one member of team
5. Neuropsychological/psychosocial services
a) Comprehensive neuropsychological test batteries for evaluation of cerebral dysfunction for vocational and rehabilitative purposes
b) An established referral agreement for comprehensive psychogenic seizure management
c) Clinical psychological services
d) Social services
e) School services for children as required
6. Rehabilitation (inpatient and outpatient)
a) Sufficient physical therapy, occupational therapy, and speech therapy for managing the complications of simple lesional excisions
7. Consultative expertise
a) Neurosurgery (if a neurosurgeon is not program Director)
b) Internal medicine
c) Pediatrics
d) General surgery
e) Obstetrics/gynecology

B. PERSONNEL

1. Physicians
Neurologist(s) with board certification in neurology and clinical neurophysiology and/or neurosurgeon with board certification in neurosurgery. He/she should also have training in the pharmacology of antiepileptic drugs. A second such individual would also be desirable. Board certification by the American Board of Clinical Neurophysiology (ABCN) would be required of only one neurologist or neurosurgeon.
Any licensed physician could be Program Director, but ordinarily a neurologist with special expertise in epilepsy and training in neurodiagnostic techniques would serve in this role.
2. Neuropsychologist/neuropsychometrist
a) Neuropsychologist - Ph.D. in clinical psychology with specialization in clinical neuropsychology as evidenced by pre- or postdoctoral training and/or work experience; or , a Ph.D. in psychology with postdoctoral training from an APA- approved clinical neuropsychology program
Responsibilities: Supervise neuropsychological evaluations and assessments. May also supervise the interventional psychologists.
b) Psychometrist - A bachelor's degree in a behavioral science plus supervised experience in test administration and scoring under the direction of a qualified neuropsychologist. This individual will administer and score neuropsychological tests.
3. Psychosocial
a) Clinical psychologist/counseling psychologist - Ph.D. from an APA-approved clinical or counseling psychology program, with a special interest in epilepsy
b) Social Worker - ACSW preferred with experience coordinating case services for epilepsy patients in an outpatient setting
c) School services for children
4. Nursing
a) Clinical nurse specialist/nurse clinician - Qualifications to include nursing with experience in epilepsy (M.S.N. desirable)
Responsibilities: Provide patient and family education and coordinate nursing services for epilepsy center
b) Head nurse/staff nurse - Qualifications include R.N. with experience in epilepsy
Responsibilities: Coordinate nursing functions for inpatient service
5. EEG Technologist(s)
When intensive neurodiagnostic monitoring of patients is preformed, an EEG technologist, monitoring technician, or epilepsy staff nurse must observe the patient and maintain recording integrity. (A monitoring technician is defined as an individual trained in seizure observation capable of maintaining recording integrity in the temporary absence of an EEG technologist)
All technologists and technicians should be certified in basic life support. All technologists preferably would be board-eligible or certified by ABRET. All technologists should meet American EEG Society long-term monitoring qualifications. The chief technologist should be ABRET-registered and have special training in long- term monitoring.
6. Rehabilitation services
a) Registered occupational therapist
b) Physical therapist supervised by M.D.
c) Speech therapist and vocational counselor also desirable
7. Support services available on a consultative basis
a) Psychiatrist, board-certified (ABPN), with special interest and expertise in treatment of epileptic patients with psychiatric disorders, who has made a significant time commitment to the program
b) Neurosurgeon (if neurosurgeon is not Program Director)
c) Internist
d) Pediatrician
e) General surgeon
f) Obstetrician/gynecologist
g) Neuroradiologist
h) Biomedical engineer

II. Fourth Level-Medical Center for Epilepsy

A. SERVICES PROVIDED

1. Electrodiagnostic
a) 24-hour video/EEG with surface/sphenoidal electrodes with supervision by EEG technologist or epilepsy staff nurse, supported when appropriate by monitoring technician or automated ictal and interictal activity detection program
b) Intracarotid amobarbital (Wada) testing
c) Pharmacological activation/suppression of EEG
2. Epilepsy surgery
a) Emergency neurosurgery
b) Complications management
c) Open biopsy
d) Stereotactic biopsy
e) Excision of incidental lesions
f) An established referral arrangement with a fourth-level surgery center for epilepsy
3. Imaging
a) Magnetic resonance imaging
b) Computerized axial tomography
c) Cerebral angiography
4. Pharmacological expertise
a) Quality-assured antiepileptic drug levels
b) 24-hour antiepileptic drug level service
c) Pharmacokinetics analysis for each patient
5. Neuropsychological/psychosocial services
a) Comprehensive psychogenic inpatient treatment services
b) Interventive/supportive inpatient psychological and social services
c) Comprehensive neuropsychological test batteries for evaluations and localization of cerebral dysfunction as well as complete assessment of characterological and psychopathological issues
d) Supervision of the neuropsychological testing component of the intracarotid amobarbital test
e) Vocational counseling capabilities
f) School services for children as required
6. Rehabilitation (inpatient and outpatient)
a) Physical therapy
b) Occupational therapy
c) Speech therapy
d) Vocational education
7. Support services available on a consultative basis
a) Internal medicine
b) Pediatrics
c) General surgery
d) Obstetrics/gynecology
e) Rehabilitation Medicine

B. PERSONNEL

1. Physicians
a) Medical Director with board certification in neurology, or board certification in neurosurgery with special training in epilepsy and intensive neurodiagnostic monitoring techniques
b) Neurologist with board certification in neurology and special training in the pharmacology of antiepileptic drugs
Both of these individuals should have specific training in prolonged EEG recording with video monitoring capability (per American EEG Society guidelines for monitoring in epilepsy). At least one of these physicians should be certified by the American Board of Clinical Neurophysiology (ABCN).
c) Neurosurgeon, board-certified, with special interests in epilepsy
d) Psychiatrist, board-certified (ABPN), with special interest in treatment of epileptic patients with psychiatric disorders e) Pharmacologist or Pharm.D. with special interest in training in epilepsy
f) Other long-term monitoring electroencephalographers per American EEG Society guidelines
2. Neuropsychologist/neuropsychometrist
a) Neuropsychologist - Ph.D. in clinical psychology with specialization in clinical neuropsychology as evidenced by pre- or postdoctoral training and/or work experience; or, a Ph.D. in psychology with postdoctoral training from an APA- approved clinical neuropsychology program
Responsibilities: Supervise neuropsychological evaluations and assessments. May also supervise interventional psychologists.
b) Psychometrist - M.S. in psychology with training in neuropsychometrics or a bachelor's degree and a minimum of 2 years' experience in neuropsychometrics. This individual will perform neuropsychometric examinations.
3. Psychosocial
a) Clinical psychologist/counseling psychologist - Ph.D. from an APA-approved clinical or counseling psychology program, with a special interest in epilepsy
b Social worker - ACSW preferred with experience coordinating case services for epilepsy patients in an outpatient setting
c) School services for children
4. Nursing
a) Clinical nurse specialist/nurse clinician - Qualifications to include nursing with experience in epilepsy (M.S.N. desirable)
Responsibilities: Provide patient and family education and coordinate nursing services for epilepsy center.
b) Head nurse/staff nurse - Qualifications include R.N. with experience in epilepsy
Responsibilities: Coordinate nursing functions for inpatient service
5. EEG Technologist(s)
When intensive neurodiagnostic monitoring of patients is performed, an EEG technologist, monitoring technician, or epilepsy staff nurse must observe the patient and maintain recording integrity. (A monitoring technician is defined as an individual trained in seizure observation and capable of maintaining recording integrity in the temporary absence of an EEG technologist.)
All technologists and technicians should be certified in basic life support. All technologists preferably would be board-eligible or certified by ABRET. All technologists should meet American EEG Society long-term monitoring qualifications. The chief technologist should be ABRET-registered and have special training in long- term monitoring.
6. Rehabilitation services
a) Registered occupational therapist
b) Physical therapist supervised by M.D.
c) Speech therapist and vocational counselor also preferred
7. Support services
a) Internist
b) Pediatrician
c) General surgeon
d) Obstetrician/gynecologist
e) Rehabilitation medicine (physiatrist)
f) Neuroradiologist
g) Biomedical engineer

III. Fourth Level - Surgical Center for Epilepsy

A. SERVICES PROVIDED

1. Electrodiagnostic
a) 24-hour video/EEG with surface and sphenoidal electrodes with supervision by EEG technologist or epilepsy staff nurse, supported when appropriate by monitoring technician or automated seizure and interictal activity detection program.
b) Invasive 24-hour recording with subdural electrodes, depth electrodes, or epidural electrodes under continual supervision and observation
c) Intracarotid amobarbital (Wada) testing
d) Functional cortical mapping utilizing subdural electrodes or intraoperative stimulation
e) Evoked potential recording, capable of being used safely with implanted electrodes
f) Electrocorticography
2. Epilepsy surgery
a) Emergency neurosurgery
b) Complication management
c) Open biopsy
d) Stereotactic biopsy
e) Lesional excision
f) Intracranial electrodes and cortical resection
g) Corpus callosotomy
h) Cortical resection, including hemispherectomy
i) Clinical experience of greater than 25 cases per year
3. Imaging
a) Magnetic resonance imaging
b) Computerized axial tomography
c) Cerebral angiography
4. Pharmacological expertise
a) Quality-assured antiepileptic drug levels
b) 24-hour antiepileptic drug level service
c) Pharmacokinetics consultative services
5. Neuropsychological/psychosocial services
a) Comprehensive neuropsychological test batteries for localization of cerebral dysfunction as well as complete assessment of characterological and psychopathological issues
b) Interventive and supportive inpatient psychological and social services
c) School services for children
6. Rehabilitation (inpatient and outpatient)
a) Physical therapy
b) Occupational therapy
c) Speech therapy
d) Vocational education
7. Consultative expertise
a) Psychiatrist, board-certified (ABPN), with special interest in treatment of epileptic patients with psychiatric disorders
b) Internal medicine
c) Pediatrics
d) General surgery
e) Obstetrics/gynecology

B. PERSONNEL

1. Physicians
a) Neurologist with board certification in neurology and special training in invasive intensive neurodiagnostic monitoring (per American EEG Society guidelines for monitoring in epilepsy)
b) Neurosurgeon with board certification, special interests in epilepsy, and experience in resection of epileptogenic tissue and invasive monitoring techniques
At least one of these physicians should be certified by the American Board of Clinical Neurophysiology (ABCN).
c) Other long-term monitoring electroencephalographers per American EEG Society guidelines
Either the neurologist (a) or the neurosurgeon (b) would ordinarily serve as Program Director.
2. Neuropsychologist/neuropsychometrist
a) Neuropsychologist - Ph.D. in clinical psychology with specialization in clinical neuropsychology as evidenced by pre- or postdoctoral training and/or work experience; or, a Ph.D. in psychology with postdoctoral training from an APA- approved clinical neuropsychology program
Responsibilities: Supervise neuropsychological evaluations and assessments. May also supervise interventional psychologists.
b) Psychometrist - M.S. in psychology with training in neuropsychometrics or a bachelor's degree and a minimum of 2 years' experience in neuropsychometrics. This individual will perform neuropsychometric examinations.
3. Psychosocial
a) Clinical psychologist/counseling psychologist - Ph.D. from an APA-approved clinical or counseling psychology program and a special interest in epilepsy
b) Social worker - ACSW preferred with experience coordinating case services for epilepsy patients in an outpatient setting
c) School services for children
4. Nursing
a) Clinical nurse specialist/nurse clinician - Qualifications to include nursing with experience in epilepsy (M.S.N. desirable)
Responsibilities: Provide patient and family education and coordinate nursing services for epilepsy center
b) Head nurse/staff nurse - Qualifications include R.N. with experience in epilepsy
Responsibilities: Coordinate nursing function for inpatient service
5. EEG Technologist(s)
When intensive neurodiagnostic monitoring of patients is performed, an EEG technologist, monitoring technician, or epilepsy staff nurse must observe the patient and maintain recording integrity. (A monitoring technician is defined as an individual trained in seizure observation and capable of maintaining recording integrity in the temporary absence of an EEG technologist.)
All technologists and technicians should be certified in basic life support. All technologist preferably would be board-eligible or certified by ABRET. All technologists should meet American EEG Society long-term monitoring qualifications. The chief technologist should be ABRET-registered and have special training in long-term monitoring.
6. Rehabilitation services
a) Registered occupational therapist
b) Physical therapist supervised by M.D.
c) Physiatrist with special interest in neurological dysfunction
d) Speech therapist and vocational counselor also preferred
7. Support services
a) General internist
b) Pediatrician
c) General surgeon
d) Obstetrician/gynecologist
e) Neuroradiologist
f) Biomedical engineer

IV. Facilities

Continuous observation of patients undergoing intensive neurodiagnostic monitoring is mandatory. This is particularly critical for patients with indwelling electrodes. Observation must be by qualified health-care providers such as EEG technologists or epilepsy staff nurses, as defined under Personnel. Such observation is, of course, in addition to ongoing medical and nursing care.

Facilities for the management of epilepsy should in general include:

Fourth-level surgical programs that perform monitoring of patients with indwelling electrodes must assure electrical safety and must meet the standards of the American EEG Society's recommendations for intensive neurodiagnostic monitoring.

A separate outpatient recording unit may be acceptable in a tertiary - or fourth - level facility if appropriate care can be assured for patients with medical emergencies. This can be accomplished through contractual arrangements with a nearby hospital to provide such emergency services. There must also be ready access to emergency resuscitative equipment in the outpatient monitoring suite itself. Medication reduction to increase seizure yield is not recommended in an outpatient setting.

Patient Referral to Specialty Epilepsy Care

Sophisticated diagnostic procedures and surgical treatment must be available for those patients who are likely to benefit from such care. It is essential that persons experiencing seizures be seen and treated at the appropriate level of care. It is important not only that the most difficult cases of epilepsy be referred for specialty care, but also that patients who can be successfully treated at the primary- or secondary- care level are not inappropriately referred for specialty care.

The first step for individuals experiencing an initial seizure or seizures is to consult their primary-care physician in their own community. This may involve hospitalization, or if the first seizure was an isolated event and took place more than a week prior to the physician visit, an outpatient evaluation may be sufficient. The primary-care physician may choose to begin a treatment program or refer the individual to a general neurologist for a consultation. In any event, if seizure control cannot be achieved at the primary-care level within approximately 3 months, a referral to a general neurologist is indicated. The neurologic consultation would include a history and physical examination, metabolic studies, and various other studies including routine EEG examinations as described in the flow sheet. If the patient's seizures are well-controlled the patient can be followed on an outpatient basis, with follow-up visits to the neurologist as needed.

If seizure control is not achieved by the general neurologist within another 9 months, referral to a tertiary- or fourth-level epilepsy center should be made without further delay. The referral may be to an epilepsy center with or without epilepsy surgery capability, depending on the seizure type and availability of consultants. Referral from a tertiary- to a fourth-level center should be based on the need for one or more of these specific requirements:

About the National Association of Epilepsy Centers

The National Association of Epilepsy Centers (NAEC) was founded in 1987 as a nonprofit organization whose goals are complementary to those of existing scientific and charitable organizations such as the American Epilepsy Society and the Epilepsy Foundation of America. Its original members were directors of 10 prominent epilepsy centers across the country. It has since grown to include the majority of specialized epilepsy centers in the United States.

NAEC's activities are based on four overall goals:

  1. To provide information about issues relevant to the care of patients with epilepsy to appropriate government and industry officials.
  2. To exchange information among its members about the business aspects of providing such services.
  3. To participate in the development of standards for facilities and programs for providing these services.
  4. To assist in the development of standards for the provision of medical and surgical treatment of epilepsy.


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