Guidelines for Specialized Epilepsy Centers
Summary of Recommendations
Background
Inpatient Services/EMU
- All epilepsy centers should have an EMU, which is a dedicated inpatient location for performing 24-h continuous video-EEG monitoring for seizure classification or localization.
- All epilepsy centers should have 24/7, continuous, real-time supervision of ongoing VEEG studies in the EMU.
- All epilepsy centers should have physicians with sufficient training and expertise to provide optimal care.
- All epilepsy centers should have sufficient volume of patients admitted to the EMU to maintain the expertise of the epilepsy care team.
- All epilepsy centers should have EMUs that are equipped to handle epilepsy-related emergencies.
- All epilepsy centers should implement written protocols regarding response to events that occur in the EMU.
- All epilepsy centers should have a standard set of admission orders and protocols for patients admitted to the EMU.
- All epilepsy centers caring for children should have pediatric-specific protocols and resources.
- All epilepsy centers should provide EMU reports that meet ACNS standards.
- Centers should provide patient and caregiver education in preparation for EMU admission.
- Centers should regularly inform EMU patients and/or caregivers of important findings in their evaluation and changes in the care plan.
- Centers should provide EMU discharge planning and education that is shared with patients and caregivers, including safe medication resumption or guidance on new medication, follow-up care, and contact information.
Surgery
- All epilepsy centers should regularly screen patients for drug-resistant epilepsy and refer such patients to multidisciplinary surgical conference for consideration of epilepsy surgery.
- All centers that perform epilepsy surgery should have a formal presurgical conference with the multidisciplinary team to evaluate and plan for each patient referred for epilepsy surgery.
- Multidisciplinary surgical conferences should be able to appropriately screen patients for all epilepsy surgery options and recommend the best procedure for controlling a patient's epilepsy without regard to whether it is performed at the center. Centers that do not perform specific epilepsy surgical procedures should refer patients to a center that performs those procedures, when appropriate.
- All epilepsy centers that perform intracranial surgery should have the capability of performing 24-h video-EEG monitoring with intracranial electrodes, including stereo EEG and subdural electrodes.
- All centers that perform resective surgeries should have the ability to perform intraoperative electrocorticography to identify epileptogenic tissue.
- Centers that perform intracranial surgeries should have the ability to perform functional mapping, including motor, sensory, language, and behavioral modalities.
- All centers that perform surgery should have the ability to preoperatively assess language dominance and memory.
- All centers that perform epilepsy surgery should have a neurosurgeon with specialized training and experience in epilepsy surgery.
- All centers that perform epilepsy surgery should have sufficient volume of cases to maintain expertise of the multidisciplinary surgical epilepsy care team.
- All epilepsy centers that perform resective surgery should have surgical specimens analyzed by a neuropathologist who generates a formal pathology report.
Diagnostic Evaluation
- All epilepsy centers should have neuropsychologist(s) with training in neuropsychometric evaluation on site or by referral to perform or supervise clinical neuropsychological evaluations for patients manifesting or expressing neurocognitive symptoms or being evaluated for epilepsy surgery.
- All epilepsy centers should have CT and MRI with optimized epilepsy-specific MRI protocols.
- For centers that perform surgery, PET, SPECT, and/or MEG should be used when appropriate to increase the yield of presurgical localization of the seizure focus and assist in surgical decision-making.
- For centers that perform surgery, fMRI, MEG, other functional mapping modalities, and/or Wada tests with cerebral angiography should be available to assist in localization of eloquent functions.
- Centers that perform diagnostic imaging should have studies interpreted by personnel with appropriate specialty training and certification.
- All epilepsy centers should use genetic testing as part of the diagnostic workup for patients with intractable epilepsy of unknown etiology.
- All epilepsy centers should have an established protocol to identify those patients who would most likely benefit from genetic testing, even if their seizures are well controlled.
- All epilepsy centers should offer genetic counseling from a certified genetic counselor either within the program or by referral.
Outpatient Services
- All epilepsy centers should optimize scheduling to achieve timely appointments both for new and existing patients. This should include triaging patients with urgent need for evaluation.
- All epilepsy centers should include telehealth services as an option for outpatient care.
- All epilepsy centers should facilitate patient communication using both telephone and virtual health care access services with prompt response to patient concerns.
- All epilepsy centers should regularly assess patient medication adherence and side effects as part of routine outpatient care.
- All epilepsy centers should have strategies to assist patients with navigating barriers to medication access.
- All epilepsy centers should have a care coordinator(s) assigned to facilitate referrals for services a center does not provide, to facilitate communication between center providers and outside specialists or agencies, to ensure smooth patient transitions between inpatient and outpatient care, and to assist in transitioning from pediatric to adult epilepsy care providers.
- Epilepsy centers that serve children should have a well-defined protocol to facilitate transition between pediatric and adult care.
- All epilepsy centers should be able to provide comprehensive care for PNEEs.
- All epilepsy centers should be prepared to care for patients with special needs including those with motor, sensory, and behavioral disorders, and intellectual and developmental disabilities.
- All epilepsy centers should provide counseling to PWE and childbearing potential on the impact of epilepsy and antiseizure medications on contraception and pregnancy.
- All epilepsy centers should provide epilepsy-specific patient educational materials and referrals to support groups and community resources.
- All epilepsy centers should provide patients with individualized written seizure safety management plans including seizure precautions, recognition, triggers, first aid, and rescue medications.
- All epilepsy centers should provide PWE and caregivers with information on the risks of SUDEP and life-threatening events related to epilepsy.
- All epilepsy centers should assess the impact of social determinants of health on patients and offer referral for support services when necessary.
- Centers should offer interpretation services and written translation for patients and caregivers with language barriers.
- All centers should regularly screen patients for behavioral health comorbidities and offer referrals for treatment when necessary.
- All epilepsy centers should have a licensed clinical social worker on staff to assess and address, as appropriate, the disproportionate impact epilepsy has on educational, social, emotional, and vocational needs.
- All epilepsy centers that offer dietary therapy should have a registered dietitian with expertise in managing dietary therapies.
- Pediatric epilepsy centers should have a ketogenic diet program for treatment of epilepsy within the center or by referral, which must include both an epileptologist and a registered dietitian.
- All centers should have a protocol addressing regular screening for neurodevelopmental and cognitive comorbidities in patients with epilepsy, with referrals for appropriate rehabilitation services.
- All centers should provide physical, occupational, and speech therapy services within the center or by referral.
- All epilepsy centers should anticipate potential rehabilitative needs for patients undergoing epilepsy surgery and include appropriate preoperative assessment to plan for presurgical and postsurgical therapy services.
Recommendation Grading
Disclaimer
Overview
Title
Guidelines for Specialized Epilepsy Centers
Authoring Organization
National Association of Epilepsy Centers
Publication Month/Year
February 1, 2024
Last Updated Month/Year
April 1, 2024
Document Type
Guideline
Country of Publication
US
Document Objectives
The National Association of Epilepsy Centers first published the guidelines for epilepsy centers in 1990, which were last updated in 2010. Since that update, epilepsy care and the science of guideline development have advanced significantly, including the importance of incorporating a diversity of stakeholder perspectives such as those of patients and their caregivers. Currently, despite extensive published data examining the efficacy of treatments and diagnostic testing for epilepsy, there remain significant gaps in data identifying the essential services needed for a comprehensive epilepsy center and the optimal manner for their delivery. The trustworthy consensus-based statements (TCBS) process produces unbiased, scientifically valid guidelines through a transparent process that incorporates available evidence and expert opinion. A systematic literature search returned 5937 relevant studies from which 197 articles were retained for data extraction. A panel of 41 stakeholders with diverse expertise evaluated this evidence and drafted recommendations following the TCBS process. The panel reached consensus on 52 recommendations covering services provided by specialized epilepsy centers in both the inpatient and outpatient settings in major topic areas including epilepsy monitoring unit care, surgery, neuroimaging, neuropsychology, genetics, and outpatient care. Recommendations were informed by the evidence review and reflect the consensus of a broad panel of expert opinions.
Inclusion Criteria
Male, Female, Adolescent, Adult, Child, Older adult
Health Care Settings
Ambulatory, Outpatient, Operating and recovery room
Intended Users
Nurse, nurse practitioner, physician, physician assistant
Scope
Counseling, Assessment and screening, Management
Diseases/Conditions (MeSH)
D004827 - Epilepsy
Keywords
epilepsy, epilepsy center
Source Citation
Lado FA, Ahrens SM, Riker E, Muh CR, Richardson RM, Gray J, Small B, Lewis SZ, Schofield TJ, Clarke DF, Hopp JL, Lee RR, Salpekar JA, Arnold ST; National Association of Epilepsy Guidelines for Specialized Epilepsy Centers Panel. Guidelines for Specialized Epilepsy Centers: Executive Summary of the Report of the National Association of Epilepsy Centers Guideline Panel. Neurology. 2024 Feb;102(4):e208087. doi: 10.1212/WNL.0000000000208087. Epub 2024 Feb 2. PMID: 38306606.