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Data on Specialized Epilepsy Centers: Report to the Institute of Medicine’s Committee on the Public Health Dimensions of the Epilepsies

Prepared by the National Association of Epilepsy Centers
Robert J. Gumnit, M.D.
David M. Labiner, M.D.
Nathan B. Fountain, M.D.
Susan T. Herman, M.D.

The National Association of Epilepsy Centers (NAEC) is pleased to provide the Institute of Medicine’s (IOM’s) Committee on the Public Health Dimensions of the Epilepsies with data related to services provided by specialized epilepsy centers.

BACKGROUND INFORMATION ON SPECIALIZED EPILEPSY CENTERS

The goal of epilepsy treatment provided in a specialized epilepsy center is to eliminate seizures and side effects (CDC et al., 1997). NAEC defines a specialized epilepsy center as a program that specializes in providing comprehensive diagnostic and treatment services to individuals with uncontrolled seizures (i.e., refractory epilepsy). Of the 2.7 million Americans estimated to have some form of epilepsy, approximately 30 percent do not have adequate seizure control and suffer from refractory epilepsy (Kobau et al., 2008).

Typically, epilepsy care starts with an evaluation at an emergency room or a primary care physician’s office. This is considered the first level of epilepsy care. It then most often proceeds to the second level of epilepsy care,



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C Data on Specialized Epilepsy Centers: Report to the Institute of Medicine’s Committee on the Public Health Dimensions of the Epilepsies Prepared by the National Association of Epilepsy Centers Robert J. Gumnit, M.D. David M. Labiner, M.D. Nathan B. Fountain, M.D. Susan T. Herman, M.D. T he National Association of Epilepsy Centers (NAEC) is pleased to provide the Institute of Medicine’s (IOM’s) Committee on the Public Health Dimensions of the Epilepsies with data related to services provided by specialized epilepsy centers. BACKGROUND INFORMATION ON SPECIALIZED EPILEPSY CENTERS The goal of epilepsy treatment provided in a specialized epilepsy center is to eliminate seizures and side effects (CDC et al., 1997). NAEC defines a specialized epilepsy center as a program that specializes in providing comprehensive diagnostic and treatment services to individuals with un- controlled seizures (i.e., refractory epilepsy). Of the 2.7 million Americans estimated to have some form of epilepsy, approximately 30 percent do not have adequate seizure control and suffer from refractory epilepsy (Kobau et al., 2008). Typically, epilepsy care starts with an evaluation at an emergency room or a primary care physician’s office. This is considered the first level of epi- lepsy care. It then most often proceeds to the second level of epilepsy care, 509

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510 EPILEPSY ACROSS THE SPECTRUM which is a consultation with a general neurologist or possibly a specialized epilepsy center if considered necessary and locally available. Many, and perhaps most, patients with seizures can be initially evaluated and man- aged at the first or second level of epilepsy care by a primary care physi- cian or a general neurologist in their local community. If seizure control is obtained, no further specialized epilepsy evaluation may be necessary. If seizures persist and cannot be brought under control by the primary care provider within 3 months, further neurological intervention is appropriate; the neurologist should assume full management of the patient’s care at this point (Scheuer and Pedley, 1990). Once seizures are under control, care can be transferred back to the primary care provider. NAEC recommends that referral to a level 3 or 4 specialized epilepsy center should occur when a patient’s seizures are not fully controlled with the resources available to the general neurologist after 1 year. This recom- mendation was included in a technical assistance document supported by a grant from the Centers for Disease Control and Prevention for state Medicaid programs in contracting with managed care plans for epilepsy services (GWUMC, 2002). Level 3 and 4 epilepsy centers provide an interdisciplinary and compre- hensive approach to the diagnosis and treatment of patients with epilepsy. The team typically includes neurologists and neurosurgeons, neuropsy- chologists, nurse specialists, electroencephalography (EEG) technologists, and other personnel with special training and experience in the treatment of epilepsy. The primary goal of the team is to achieve complete control or at least a reduction in the frequency of seizures and/or medical side ef- fects in patients with refractory epilepsy. This is accomplished through a comprehensive epilepsy evaluation, which provides epilepsy specialists with the necessary information to formulate a treatment plan, whether medical, surgical, or through use of an implanted stimulator. A comprehensive epilepsy evaluation may require an inpatient admis- sion to the epilepsy center’s epilepsy monitoring unit (EMU). The evalu- ation is done to confirm a diagnosis of epilepsy seizures, to classify the type of seizures, and/or to determine if the patient would be a candidate for epilepsy surgery. It can include EEG monitoring with video (vEEG), cognitive testing, specialized brain imaging, and other procedures to de- termine the diagnosis and to prepare the most effective medical or surgical treatment plan. During hospitalization, withdrawal of seizure medications is often necessary to precipitate seizures in order to characterize them. In some cases, this may precipitate generalized tonic-clonic or severe seizure types that the patient is otherwise unlikely to experience, or it could pre- cipitate status epilepticus. Balancing the need to provoke seizures but not induce status epilepticus requires expertise and intensive care. Seizures are recorded with vEEG and analyzed by an epileptologist and other members

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511 APPENDIX C of the center team who collectively determine the patient’s course of treat- ment. To develop the patient’s treatment plan the interdisciplinary team also considers medical and mental health comorbidities, injury and safety assessments, patient and family educational needs, rehabilitation needs, and social, occupational, and educational dysfunction. Level 3 epilepsy centers provide the basic range of medical, neuropsy- chological, and psychosocial diagnostic and treatment services needed to treat patients with refractory epilepsy. In addition, many level 3 centers offer noninvasive evaluation for epilepsy surgery, straightforward resec- tive epilepsy surgery, and implantation of devices such as the vagus nerve stimulator. Knowledge of and experience with epilepsy surgery have become sufficiently widespread that lesionectomy and anterior temporal lobectomy in the presence of clear-cut mesiotemporal sclerosis can be performed at level 3 epilepsy centers. The center’s epileptologists are fully knowledgeable regarding all surgical options available and establish appropriate referral arrangements for more complex surgeries to level 4 centers. Level 4 epilepsy centers serve as regional and/or national referral fa- cilities for patients with refractory epilepsy and offer a complete evalua- tion for epilepsy surgery. These centers provide more complex forms of intensive neurodiagnostic monitoring, as well as more extensive medical, neuropsychological, and psychosocial treatment, including intracranial elec- trode placement, functional cortical mapping, evoked potential recording, electrocorticography, and resection of epileptogenic tissue in the absence of structural lesions; they also provide a broad range of surgical procedures for epilepsy. Many level 4 centers are actively involved in clinical trials and are well aware of trials conducted in other level 4 centers to make patient referrals. SURVEY DATA Data for this analysis were collected from two surveys sent to NAEC membership in 2011. The first source is NAEC’s center designation survey, which is sent to all NAEC member centers annually. Each year, NAEC asks its members to provide information on their personnel, facilities, and services. The survey is based on NAEC’s Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers (Labiner et al., 2010). In 2011, 133 centers completed this survey. The NAEC annual designation survey has an extremely high response rate and provides infor- mation from approximately 90 percent of the specialized epilepsy centers in the United States. Following discussions with members of the IOM committee and staff, NAEC sent a supplemental survey to its members in August 2011. This survey (see below) sought additional information on numbers of patients

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512 EPILEPSY ACROSS THE SPECTRUM seen annually, referral patterns, waiting times, and follow-up care. Forty- seven centers participated in this survey. The supplemental survey was blinded as to which centers responded so that the identity and level of the centers are not known. Nevertheless, the data are likely to be generalizable in a broad sense. 2011 National Association of Epilepsy Centers Designation Survey—Data from 133 Centers Personnel Based on the information gathered in its designation survey, NAEC recognized 115 level 4 and 18 level 3 epilepsy centers. On average, level 3 centers reported having one to three epileptologists and a neurosurgeon. Level 4 centers, on average, had three to six full-time epileptologists and two neurosurgeons. Level 4 centers tended to have a full-time advanced practice nurse and neuropsychologist, while most level 3 centers had part- time personnel in these positions. Number of Inpatient vEEG and Surgery Cases As part of the annual designation survey, centers reported the num- ber of hospital inpatient cases of vEEG. This can be used as a proxy for the annual number of inpatient admissions for a comprehensive epilepsy evaluation. The level 3 centers reported 115 cases (median) of vEEG and level 4 centers reported 330 cases (median) of vEEG. Level 3 and 4 centers reported a total of 3,022 surgeries. 2011 Supplemental Survey for the Institute of Medicine—Data from 47 Centers Forty-seven centers completed the supplemental survey. Total numbers are given below: • On average, each center saw 1,300 unique patients with a diagnosis of epilepsy. • On average, each center had 3,400 total outpatient visits where the patient was seen by an epileptologist. • Waiting time for a new patient to see an epilepsy specialist averaged 32 days, with a median of 21 days. • Waiting time for an inpatient evaluation to the center’s EMU aver- aged 25 days, with a median of 21 days.

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513 APPENDIX C • Of those patients admitted to the EMU for a pre-surgical evalua- tion, 29 percent went on to have epilepsy surgery. • Referral patterns varied significantly across the centers surveyed. Across all centers, the average percentage of patients referred from each source was as follows: Primary care providers: 40.30 percent (range of 5 to 95 percent) Neurologists: 35.6 percent (range of 5 to 80 percent) Non-neurologist specialists: 16.2 percent (range of 0 to 65 percent) Epilepsy Foundation or other organizations: 4 percent (range of 0 to 25 percent) • On average, two-thirds of patients (66.4 percent) are seen for long- term, ongoing epilepsy care at an epilepsy center, rather than being returned to the referring provider. DISCUSSION Overall, these data suggest that only a minority of the 1 million Ameri- cans with refractory epilepsy are seen at an epilepsy center in any 1 year. If there are approximately 170 epilepsy centers nationally, then approximately 221,000 unique patients, or 22 percent of Americans with refractory epi- lepsy, are seen at these centers annually. Despite recommendations to the contrary, less than a quarter of patients with uncontrolled seizures see an epilepsy specialist. The data also show that an even smaller number of patients with re- fractory epilepsy are admitted to an EMU for a comprehensive evaluation. Using a median number of 330 vEEG cases at the level 4 centers as a proxy for the number of inpatient admissions to the centers, we can extrapolate somewhere between 50,000 and 60,000 admissions to EMUs in the United States. This suggests that an even smaller number of patients are being fully evaluated and effectively treated. Level 3 and 4 centers reported 3,022 surgeries annually. It is likely that epilepsy surgery takes place at a few centers that are not members of NAEC or did not report data. However, even a conservative estimate would be that 4,000 surgeries per year are performed in the United States. This suggests that surgery is underutilized because epidemiological data suggest that 100,000 to 200,000 people in the United States are candidates for epilepsy surgery. The data on referral sources for epilepsy centers are difficult to in- terpret. The surveys showed that patients are referred to epilepsy centers almost evenly by primary care physicians and neurologists. However, the

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514 EPILEPSY ACROSS THE SPECTRUM high numbers of primary care referrals may be due to the fact that many insurers require referrals to be formally generated by primary care providers even when it is a neurologist who makes the recommendation for referral. The data overall suggest a shortage of epilepsy specialists. Waiting times to see a specialist at a center or to be admitted to the hospital for an epilepsy evaluation are 3 to 4 weeks. The data also show that many patients receive their ongoing epilepsy care at the center. This means that epilepsy clinics rapidly fill up with returning patients and leave few appointments available for new patient evaluations. This is reflected in the average 3-week waiting time to see an epileptologist. NATIONAL ASSOCIATION OF EPILEPSY CENTERS SURVEY FOR THE INSTITUTE OF MEDICINE—AUGUST 2011 As many of you know, the Institute of Medicine (IOM) is currently undertaking a review of the public health dimensions of the epilepsies. The IOM has asked NAEC to help collect data related to the care of patients in epilepsy centers. The brief survey should not take you more than a few minutes to complete, but if possible, please pull data from your center to complete the survey. We recognize that some answers may be estimates of the typical experience at your center. Thanks in advance for completing the survey. We want to provide IOM with the best possible information about the state of epilepsy care in the United States and know that this data will help that effort. 1. How many patients with the diagnosis of epilepsy are seen in your center’s outpatient clinic or office by an epileptologists annually (unique number of patients, not patient visits)? 2. What is the total number of outpatient visits with an epileptologist for a diagnosis of epilepsy (including patients who are seen more than once per year) that occur annually at your center? 3. What are your major referral sources? Please provide a percentage for each, adding up to 100 percent. • Primary care providers • General neurologists • Other non-epilepsy/neurologist specialists • Epilepsy Foundation or other organization 4. What is the average waiting time in days for a new patient to get an appointment to see an epilepsy specialist at your center?

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515 APPENDIX C 5. What is the average waiting time in days for a patient to be admit- ted to your epilepsy monitoring unit for a routine admission? 6. What percentage of patients referred to your center for an epilepsy surgery evaluation go to have epilepsy surgery? 7. What percentage of your patients are seen for long-term, ongoing epilepsy care rather than returned to the referring provider? 8. What is the percentage of patients transferred back to the referring physician for further ongoing epilepsy care? • Primary care physician • General neurologist REFERENCES CDC (Centers for Disease Control and Prevention), AES (American Epilepsy Society), Epilepsy Foundation, and NAEC (National Association of Epilepsy Centers). 1997. Living Well with epilepsy: Report of the 1997 National Conference on Public Health and Epilepsy. http://www.cdc.gov/epilepsy/pdfs/living_well_1997.pdf (accessed February 2, 2012). GWUMC (George Washington University Medical Center). 2002. Optional purchasing specifications for services related to epilepsy: A technical assistance document. http:// www.gwumc.edu/sphhs/departments/healthpolicy/CHPR/newsps/epilepsy/epilepsy_specs. pdf (accessed December 21, 2010). Kobau, R., H. Zahran, D. J. Thurman, M. M. Zack, T. R. Henry, S. C. Schachter, and P. H. Price. 2008. Epilepsy surveillance among adults—19 states, Behavioral Risk Factor Sur- veillance System, 2005. Morbidity and Mortality Weekly Report Surveillance Summaries 57(6):1-20. Labiner, D. M., A. I. Bagic, S. T. Herman, N. B. Fountain, T. S. Walczak, and R. J. Gumnit. 2010. Essential services, personnel, and facilities in specialized epilepsy centers: Revised 2010 guidelines. Epilepsia 51(11):2322-2333. Scheuer, M. L., and T. A. Pedley. 1990. The evaluation and treatment of seizures. New England Journal of Medicine 323(21):1468-1474

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