Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers in the United States

The treatment of seizure disorders requires more than the right choice of an antiepileptic medicine, or even the ability to perform epilepsy surgery. Seizures and their treatment affect many aspects of health and the ability to function in modern society. These needs have been recognized by the formation of specialized epilepsy centers. Initially the emphasis of these centers was necessarily on arriving at an accurate diagnosis and choosing the best acute intervention—medical or surgical. This attitude was reflected in the initial set of guidelines published by the National Association of Epilepsy Centers in 1989. Today the emphasis should shift to a systematic approach to chronic disease. The resources required for modern treatment are so great that only a few major centers can hope to provide all that any patient might need. The revised guidelines reflect these new conditions. The National Association of Epilepsy Centers believes that the year 2001 guidelines will set a new direction, helping to improve access to safe and effective treatment for all patients with seizure disorders. Eleven years ago, the National Association of Epilepsy Centers (NAEC) established an initial set of guidelines for services, personnel, and facilities that should be available at specialized epilepsy centers (1). We now present an updated version for the beginning of the 21st century. The purpose of this document is to assist existing and developing epilepsy centers to obtain and organize the components necessary for comprehensive epilepsy care. This document also provides consumers and purchasers of health care with criteria to evaluate the appropriateness and quality of specialized epilepsy care. The last “Decade of the Brain” has seen an explosion in the diagnostic and treatment options available to people with epilepsy. Both consumers and purchasers of health care services have increasingly demanded that these treatments clearly and directly improve quality of life. The goal of treatment, no seizures and no side effects (2), is increasingly achievable and expected. At the same time, purchasers of health care expect this goal to be achieved more efficiently and at lower costs. The convergence of these three forces has increased the need for a well-organized approach to subspecialty epilepsy care and provides the motivation for these revisions of the guidelines. We define a specialized epilepsy center to be a program providing comprehensive diagnostic and treatment services primarily or exclusively to people with intractable epilepsy. Such a program is staffed by physicians, psychologists, nurses, technologists, and other personnel with special training and experience in the treatment of epilepsy. It includes facilities and equipment necessary to provide appropriate care or has well-established patterns of access to necessary facilities. An established administrative system assures that these services are delivered appropriately and efficiently. Contemporary diagnostic and treatment options are so numerous that it is not realistic to expect any center to provide them all. Local needs will and should lead to differences in services provided as well. These guidelines list the essential services that two levels of specialty epilepsy centers should provide. Epilepsy care can be divided into four levels. First-level care is provided by the primary care physician. Second-level care is provided by a general neurologist. Most patients with epilepsy are adequately treated at these levels. Patients with persisting seizures or side effects have failed standard treatment and should be referred to a third- or fourth-level specialty epilepsy center. Suggested criteria for referral are included in these guidelines. A third-level epilepsy center should provide the basic range of medical, neuropsychological, and psychosocial services needed to treat patients with refractory epilepsy. Third-level medical centers provide basic neurodiagnostic evaluation, as well as basic medical, neuropsychological, and psychosocial services. These centers do not perform resective epilepsy surgery, although some may implant vagus nerve stimulators. Third level medical–surgical centers provide basic diagnostic and treatment services. In addition, these centers offer noninvasive evaluation for epilepsy surgery, straightforward resective epilepsy surgery, and implantation of the vagus nerve stimulator. These centers do not perform intracranial evaluations or other more complex resective epilepsy surgery. Knowledge and experience with epilepsy surgery has become sufficiently widespread that straightforward surgical interventions at the third level are now reasonable. However, third-level centers that offer such surgery should meet additional requirements. It is important that physicians making health care decisions at such centers be fully knowledgeable regarding all surgical options available and establish appropriate referral arrangements with fourth-level centers. If surgery is required, the best surgical procedure for the particular situation must be recommended, and this may not necessarily be the procedure that can be provided locally. Third-level centers will typically be found at many universities and some large community hospitals. A fourth-level epilepsy center serves as a regional or national referral facility. This center should provide the more complex forms of intensive neurodiagnostic monitoring, as well as more extensive medical, neuropsychological, and psychosocial treatment. Fourth-level centers also offer a complete evaluation for epilepsy, surgery, including intracranial electrodes, and provide a broad range of surgical procedures for epilepsy. It is important that these specialized resources be used appropriately. Although specialized epilepsy centers are not needed by most people with epilepsy, they must be available to patients with seizures or side effects after a reasonable period of care at the first and second levels. We strongly believe that early specialized intervention is more likely to achieve the best results and to be more cost effective over the long run. Patients requiring these services should therefore be identified and referred without undue delay. This argument is further developed in the section on referral guidelines. This document was developed by the members of the Committee to Revise the Guidelines for Services, Personnel and Facilities at Specialized Epilepsy Centers. After discussions with the general membership, they were adopted by the Board of the National Association of Epilepsy Centers. The Guidelines may be reviewed and updated as considered necessary by the Board. 5775 Wayzata Boulevard, Minneapolis, MN 55416 (952) 525-4526 (888) 525-6232 http://www.naecepilepsy.org Robert J. Gumnit, M.D., President, Minneapolis, MN David M. Labiner, M.D., Vice President, Tucson, AZ Marc R. Nuwer, M.D., Ph.D., Secretary/Treasurer, Los Angeles, CA Gregory L. Barkley, M.D., Detroit, MI Edwin Trevathan, M.D., St. Louis, MO Paul C. VanNess, M.D., Dallas, TX Monica A. Titus, Assistant to the President, Minneapolis, MN Thaddeus S. Walczak, M.D., Committee Chairman, Minneapolis, MN Fredrick A. Boop, M.D., Memphis, TN Gregory D. Cascino, M.D., Rochester, MN David M. Labiner, M.D., Tucson, AZ Donald M. Olson, M.D., Stanford, CA Minimum 8-h video-electroencephalogram (EEG) with surface electrodes. Supervision by EEG technologist and assistance by epilepsy staff nurse or monitoring technician if necessary Emergency or elective neurosurgery, including biopsy and removal of incidental lesions and treatment of cerebral complications of epileptic seizures. Resective epilepsy surgery (surgery whose primary aim is treatment of seizures rather than of the lesion) will generally not be performed at third-level medical centers Management of surgical complications An established referral arrangement with a third-level medical–surgical or a fourth-level center for resective or other epilepsy surgery when indicated Implantation and management of vagal nerve stimulator are reasonable although not required Magnetic resonance imaging with appropriate magnet strength and sequences for the sensitive detection of mesial temporal sclerosis and common epileptogenic lesions Computerized axial tomography Cerebral angiography Quality-assured antiepileptic drug levels 24-h antiepileptic drug level service Pharmacokinetic expertise by at least one member of the team Comprehensive neuropsychological test batteries for evaluation of cerebral dysfunction for vocational and rehabilitative purposes. Basic assessment of psychopathologic and characterological issues An established referral agreement for comprehensive management of psychogenic nonepileptic seizures Clinical psychological services for assessment and basic treatment of emotional disorders associated with chronic epilepsy Basic assessment of social and vocational needs Physical, occupational, and speech therapy for basic evaluation and treatment of multiply handicapped individuals Sufficient physical, occupational, and speech therapy for managing complications of surgeries performed at the center Neurosurgery (if not program director) Psychiatrist, board-certified (ABPN), with interest and expertise in treatment of epilepsy patients with psychiatric disorders Internal medicine Pediatrics General surgery Obstetrics/gynecology Neuroradiology Any licensed physician could be program director, but ordinarily a neurologist or neurosurgeon with special expertise in epilepsy should serve as program director Board certified neurologist(s) with expertise in epilepsy, clinical neurophysiology, video-EEG monitoring, pharmacology of anticonvulsant drugs, and the vagus nerve stimulator. Generally, neurologist(s) would have undergone fellowship training in these topics. At least two such individuals would be desirable. At least one of these individuals should be board certified in clinical neurophysiology by either the American Board of Clinical Neurophysiology or the American Board of Psychiatry and Neurology with added qualifications in Clinical Neurophysiology. Appropriate experience may substitute for clinical neurophysiology certification Neurosurgeon, board certified 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. This individual would supervise neuropsychological evaluations and assessments and may also supervise interventional psychologists Psychometrist: A bachelor's degree in a behavioral science plus supervised experience in neuropsychometric instrument administration and scoring under the direction of a qualified neuropsychologist. This individual would administer and score the neuropsychological tests Clinical psychologist/counseling psychologist: Ph.D. from an APA-approved clinical or counseling psychology program and a special interest in epilepsy Social worker: ACSW preferred with experience coordinating case services for epilepsy patients in an outpatient setting School services for children Clinical nurse specialist/nurse clinician: qualifications include R.N. with experience in epilepsy. Responsibilities are to provide patient and family education and coordinate nursing services for the epilepsy center Head nurse/staff nurse: qualifications include R.N. with experience in epilepsy. This individual would coordinate nursing functions for the inpatient service When intensive neurodiagnostic monitoring of patients is performed, an EEG monitoring or epilepsy staff nurse must the patient and An EEG technologist electrodes, of the is of for seizures and patients and A monitoring technician is as an individual in seizure and of in the of an EEG technologist and should be certified in basic would be or certified by the American Board of for EEG should meet American EEG monitoring qualifications The technologist should be and have additional training in monitoring supervised by physician and vocational 24-h video-EEG with surface with or appropriate additional electrodes. by EEG technologist or epilepsy staff when appropriate by monitoring technician or seizure detection program Emergency or elective neurosurgery, including biopsy and removal of incidental lesions and treatment of cerebral complications of epileptic seizures Management of surgical complications of epileptogenic lesions with the goal of seizures temporal in the of mesial temporal in resective epilepsy surgery A clinical experience of at least resective epilepsy surgery year on over the last or staff members of epilepsy center will include a neurosurgeon with a experience of resective epilepsy surgery over the last years and a physician has at least people for epilepsy surgery over the last years Implantation and management of vagus nerve Magnetic resonance imaging with appropriate magnet strength and sequences for the sensitive detection of mesial temporal sclerosis and common epileptogenic lesions Computerized axial tomography Cerebral angiography Quality-assured anticonvulsant drug levels. of anticonvulsant and drug levels should be available 24-h antiepileptic drug level service Pharmacokinetic expertise by at least one member of the team Comprehensive neuropsychological test batteries for evaluation of cerebral dysfunction for vocational and rehabilitative and of cerebral dysfunction in evaluation for epilepsy surgery. Basic assessment of and psychopathologic issues An established referral arrangement for comprehensive management of psychogenic nonepileptic Clinical psychological services for assessment and basic treatment of emotional disorders associated with chronic epilepsy Basic assessment of social and vocational needs services Physical, occupational, and speech therapy for basic evaluation and treatment of multiply handicapped individuals Sufficient physical, occupational, and speech therapy for managing complications of surgeries performed at the center Psychiatrist, board-certified (ABPN), with special interest in treatment of people with epilepsy and psychiatric disorders Internal medicine Pediatrics General surgery Obstetrics/gynecology Neuroradiology A neurologist or neurosurgeon with special expertise in epilepsy should serve as program director At least two board-certified with expertise in epilepsy, clinical neurophysiology, video-EEG monitoring, of patients for epilepsy surgery, and the pharmacology of anticonvulsant would have undergone fellowship training in these topics. At least one of these individuals should be board certified in clinical neurophysiology by either the American Board of Clinical Neurophysiology or the American Board of Psychiatry and Neurology with added qualifications in clinical Appropriate experience may substitute for clinical neurophysiology At least one of these individuals should have experience in the of patients for and the of the vagus nerve stimulator At least one board-certified neurosurgeon with special interest in epilepsy, experience in resective epilepsy surgery, and in the implantation of the vagus nerve stimulator 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. This individual should have experience in of neuropsychometric tests in evaluation for epilepsy and results of The would supervise neuropsychological evaluations and assessments and may also supervise interventional psychologists Psychometrist: A bachelor's degree in a behavioral science plus supervised experience in neuropsychometric instrument administration and scoring under the direction of a qualified neuropsychologist. This individual would administer and score the neuropsychological tests Clinical psychologist/counseling psychologist: Ph.D. from an APA-approved clinical or counseling psychology program with a special interest in epilepsy Social worker: ACSW with experience coordinating services for epilepsy patients in an outpatient setting Clinical nurse specialist/nurse clinician: qualifications include nursing with experience in epilepsy. Responsibilities include providing patient and family education and coordinate nursing services for epilepsy center Head nurse/staff nurse: include R.N. with experience in epilepsy. Responsibilities include coordinate nursing functions for inpatient service in at least one technologist should have experience with the and issues in the supervised by physician with special interest in dysfunction and vocational preferred Knowledge and experience with resective epilepsy surgery have the guidelines were published We define resective epilepsy surgery as of cerebral with the primary aim of epilepsy. Epilepsy training have increased the of individuals of epilepsy surgery. When the personnel, and expertise are it is reasonable to perform straightforward and straightforward temporal at the third level of epilepsy care. The of the resources necessary to evaluate patients for these surgeries and the ability to perform these surgeries third-level medical–surgical centers from third-level medical centers. We define as of a epileptogenic and that is performed primarily to treat epileptic seizures. In for a epileptogenic is the is an appropriate from cerebral necessary for and noninvasive evaluation that the and is for the seizures. in this can be performed at a third-level medical–surgical center. If these criteria are not the situation is not and intracranial evaluation will be Such patients should generally be referred to a fourth-level epilepsy center. We define temporal as the removal of a of temporal by In for temporal resonance imaging mesial temporal noninvasive evaluation that the same temporal is for the and neuropsychometric evaluation including that temporal can be temporal in this can be performed at a third-level medical–surgical center. If these criteria are not the situation is not evaluation is including intracranial Such patients should generally be referred to a fourth-level epilepsy center. experience that the vagus nerve stimulator epilepsy. In straightforward and straightforward temporal as epilepsy in the large of Patients with refractory epilepsy should therefore be for resective epilepsy surgery the vagus nerve stimulator is This approach has been strongly by the making health care decisions at third-level medical and medical–surgical centers should be fully knowledgeable regarding all surgical options available and establish referral arrangements with fourth-level centers. If epilepsy surgery is required, the best surgical procedure for the particular situation must be recommended, and this may not necessarily be the procedure that can be provided at third-level centers. When fourth-level care is required, appropriate referral must not be third- and fourth-level centers should to so that all do not have to be in referred This might include imaging video-EEG monitoring access to physicians, and to all appropriate with the 24-h video-EEG with surface with or appropriate additional electrodes. by EEG technologist or epilepsy staff when appropriate by monitoring technician or seizure detection program 24-h video-EEG with intracranial or under and as by of either or of used with intracranial Emergency or elective neurosurgery, including biopsy and removal of incidental lesions and treatment of cerebral complications of epileptic seizures. Management of surgical complications and biopsy of epileptogenic lesions with the goal of seizures temporal with or without mesial temporal sclerosis of intracranial of epileptogenic in the of lesions Implantation and management of the vagus nerve stimulator A clinical experience of at least resective epilepsy surgery and by intracranial year on over the last or staff members of epilepsy center will include A neurosurgeon with a experience of resective epilepsy surgery over the last years and intracranial and a neurologist or neurosurgeon has at least people for epilepsy surgery over the last years If the center not offer and it should establish a referral arrangement with fourth-level centers these services Magnetic resonance imaging with appropriate magnet strength and sequences for the sensitive detection of mesial temporal sclerosis and common epileptogenic lesions Computerized axial tomography Cerebral angiography to one or more of the either on or by established tomography tomography in Comprehensive neuropsychological test batteries for evaluation of cerebral dysfunction for vocational and rehabilitative and of cerebral dysfunction for evaluation for epilepsy surgery. assessment of characterological and psychopathologic issues and outpatient psychological services for assessment and treatment of emotional disorders associated with chronic epilepsy of social and vocational social services Comprehensive management of psychogenic nonepileptic seizures services for children Physical, occupational, and speech therapy for evaluation and treatment of multiply handicapped individuals Sufficient physical, occupational, and speech therapy for managing complications of surgeries performed at the center Psychiatrist, board-certified (ABPN), with special interest in treatment of people with epilepsy and psychiatric disorders Internal medicine Pediatrics General surgery Obstetrics/gynecology Neuroradiology A neurologist or neurosurgeon with special expertise in epilepsy should serve as program director At least two board-certified with expertise in epilepsy, clinical neurophysiology, video-EEG monitoring, of patients for epilepsy surgery, and the pharmacology of anticonvulsant would have undergone fellowship training in these topics. At least one of these individuals should be board certified in clinical neurophysiology by either the American Board of Clinical Neurophysiology or the American Board of Psychiatry and Neurology additional qualifications in clinical Appropriate experience may substitute for clinical neurophysiology At least one of these individuals should have experience in the of intracranial EEG and At least one of these individuals should have experience in the for and the of the vagus nerve stimulator At least one board-certified neurosurgeon with special interest in epilepsy, experience in resective epilepsy surgery, of intracranial electrodes, and of the vagus nerve stimulator. would have undergone fellowship training or additional training in these special interest and training in epilepsy in Clinical psychologist/counseling psychologist: Ph.D. from an APA-approved clinical or counseling psychology program and a special interest in epilepsy Social worker: ACSW preferred with experience coordinating case services for epilepsy patients in an outpatient setting School services for children Clinical nurse specialist/nurse clinician: qualifications to include nursing with experience in epilepsy Responsibilities include providing patient and family education and coordinate nursing services for epilepsy center Head nurse/staff nurse: include R.N. with experience in epilepsy. Responsibilities include coordinating nursing functions for inpatient service in should have experience with monitoring with intracranial and the and issues At least one technician should have experience with in the supervised by physician with special interest in dysfunction and vocational also preferred It is that section is performed is indicated do not that fourth-level centers must be to perform section or However, physicians making health care decisions at these centers should be of the for these should establish referral arrangements with fourth-level centers these procedures and patients requiring these procedures when necessary or outpatient or patients with epilepsy needed for patient care. and personnel needs must be for in the care of epilepsy patients are and intensive care should be for by level of the epilepsy center nursing or monitoring staff access to patients to and first of to by qualified such as EEG is physician or staff epilepsy nurse should be available seizures or of seizures over period requiring physician and of services in the of to seizure is not in the outpatient It should not be without physician or nurse on access to equipment in the monitoring with to provide services when needed to and should be more than in the outpatient setting of seizures is with for or in the of patients for the of and video-EEG should be and should when appropriate when patients the but access must be available at all by EEG or epilepsy staff is recommended, as appropriate by reviewed and seizure and appropriately family members or nursing may assist in some A than in standard care is necessary Epilepsy staff must be present on EEG must be available 24-h physician on 24-h of seizures or of seizures over period requiring physician to be if or of seizures is access to intensive care and services in the of in neurodiagnostic equipment and must meet and other of the American EEG for video-EEG monitoring, by EEG or epilepsy staff is recommended, as appropriate by reviewed and seizure and appropriately family members or nursing may assist in some A than in standard care is EEG monitoring, by EEG or epilepsy staff is Epilepsy staff must be present on EEG must be available 24-h physician on 24-h of in of in patients with intracranial to or other complications in patients with intracranial access to intensive care and services in the of and patients with seizures can be and by a primary care physician or a general neurologist in their community first or second level of epilepsy care with an evaluation at an or a primary care and to with a general neurologist or a specialized epilepsy care center if considered necessary or If seizure is no further specialized epilepsy evaluation may be If seizures and be under by the primary care further intervention is the neurologist should management of the seizures at this seizures are under care can be to the primary care if the diagnosis of epilepsy is in or if psychogenic nonepileptic are a referral to an epilepsy center is appropriate early in the evaluation for diagnostic purposes. diagnosis of nonepileptic is associated with also is some that evaluation after the of epileptic seizures diagnosis of the epilepsy and treatment with the best may the of seizures and anticonvulsant and of the seizures on quality of life. to specialized epilepsy centers if available should therefore be considered after seizure even if are that the diagnosis of epilepsy is for appropriate level of care to degree of seizure at referral to a Specialized Epilepsy should be primary care physician. more to define is the appropriate for a general neurologist to a patient to a specialized epilepsy center. new some have that may now to that to of patients have seizures fully with However, it also that only a of patients in the first antiepileptic drug was would become seizure with additional anticonvulsant drug treatment. The that patients with to initial medical therapy likely refractory epilepsy that would even when were referral to specialized epilepsy centers should when a seizures are not fully with the resources available to the general neurologist after The the evaluation and treatment that to referral to a specialized epilepsy center. are to specialized epilepsy centers for patients with or patients with epileptic with all patient for all epilepsy patients should on is in the best interest of the patient and treatment that is likely to improve the quality of life. an assessment of the situation will lead to an early referral to a specialized epilepsy center. or referral may be to the and quality of life. The believes strongly that the needs of the patients with seizures can best be primary care physicians, general and specialized epilepsy centers. It is the of the epilepsy center to a treatment The center and the primary care physician or general neurologist should a team to it