NAEC develops updated guidelines to improve quality of care for people with severe epilepsy

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The National Association of Epilepsy Centers (NAEC) has developed updated guidelines on the comprehensive services and resources epilepsy centers should provide to improve the quality of care for people whose epilepsy is not well controlled.

An executive summary of 2023 Guidelines for specialized epilepsy centers: report of the National Association of Epilepsy Center Guidelines Panel It was published online on February 2, 2024 Neurology®, Medical Journal of the American Academy of Neurology. The complete NAEC guidelines are published as an eAppendix on the journal’s website.

Epilepsy is one of the most common chronic neurologic conditions worldwide, with an estimated prevalence of 3.4 million in the United States. The condition, which causes repeated seizures, can be debilitating and life-threatening. It is associated with reduced quality of life and far-reaching socio-economic effects.

About 30 percent of people with epilepsy have seizures that don’t respond to medication. Uncontrolled seizures affect all aspects of life, such as the ability to learn or live independently. For these individuals, and those experiencing unacceptable side effects of antiseizure medications, epilepsy centers can provide a more personalized level of care that improves the overall well-being of the patient.

The field has changed significantly since NAEC issued its latest guideline update 10 years ago. In addition to advances in medicine, there have been addresses beyond seizure management to overall well-being. This includes care for comorbid conditions such as anxiety and depression, increased communication between patients and care teams, and addressing health disparities in the epilepsy community. Expanded guidelines are also sorely needed to help centers and hospitals obtain the resources to provide this level of comprehensive care.”

Fred Lado, MD, PhD, NAEC president, guideline panel co-chair, and regional director of epilepsy and professor of neurology at Hofstra/Northwell Zucker School of Medicine in Hempstead, New York

The 2023 guidelines include 52 recommendations that expand the range of services that should be part of high-quality epilepsy centers, including inpatient evaluation, therapeutic options, and outpatient chronic disease management. The principles recognize the importance of multidisciplinary care teams to coordinate the efforts of different specialists working together to diagnose and treat patients.

For the first time, guidelines should be recommended to the centres

  • Offer genetic testing and counseling.
  • Provide more education and communication for patients.
  • Pay more attention to the special needs of the population.
  • Appoint a care coordinator who organizes and facilitates multidisciplinary care.
  • Provide mental health screening (anxiety, depression and learning difficulties are much higher in people with epilepsy than in the general population).
  • Address health disparities and disparities in the epilepsy population.

The recommendations were informed by an evidence review and reflect the consensus of a multidisciplinary panel of 41 stakeholders, including patient and caregiver representatives, EEG technologists, nurse practitioners, social workers, neurosurgeons, neuroradiologists, and others with diverse expertise who support epilepsy center care.

“All of the recommendations reached a rapid consensus despite a diverse panel of stakeholders, which emphasizes that the recommendations reflect important elements of health care services that an epilepsy center should have in order to provide the highest quality of care,” said Susan Arnold, MD, guideline panel co-chair and Yale. A pediatric epileptologist at the University School of Medicine.

“We want to improve the quality of care across the board for people with epilepsy in the United States. NAEC has accredited centers that provide very high quality care, but each center has different strengths. By working together with these consensus guidelines, we can” Improve standards of quality care for all centers,” said Dr. Arnold.

The NAEC issued its first epilepsy center guidelines in 1990 and has developed updated guidelines every decade since. The 2023 guidelines, funded solely by NAEC, are the first established on an evidence-informed, consensus-based process. NAEC has contracted with EBQ Consulting to develop evidence-based and reliable consensus-based statements that are consistent with established international standards. In the absence of strong evidence, recommendations were guided by expert panel consensus and highlighted areas requiring additional research.

“When patients feel their treatment options are limited, they don’t have to accept ‘good enough.’ Epilepsy centers offer hope,” said Dr. Arnold. “But epilepsy centers will need resources to provide this comprehensive level of care. We hope that the guidelines will help increase health insurance and institutional support and acceptance of these recommendations.”

As additional research becomes available, practice standards are established, and clinical knowledge increases, NAEC will continue to update the guidelines. Over time, these guidelines will inform NAEC’s accreditation standards for epilepsy centers


Journal Reference:

Lado, F.A., etc (2024) Executive summary of the report of the National Association of Epilepsy Center Guidelines Panel Guidelines for Specialized Epilepsy Centers. Neurology.

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