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SUDEP counseling: Where do we stand?

Robyn Whitney1, Kevin C Jones1, Suvasini Sharma2

  • 1Division of Neurology, Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.

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Summary
This summary is machine-generated.

Sudden unexpected death in epilepsy (SUDEP) counseling is recommended but often not provided. Patients desire SUDEP risk information, while some physicians fear causing anxiety, despite evidence of benefits for epilepsy self-management.

Keywords:
SUDEPcounselingepilepsymortalityrisk factors

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Area of Science:

  • Neurology
  • Epileptology
  • Public Health

Background:

  • Sudden unexpected death in epilepsy (SUDEP) is the primary cause of epilepsy-related mortality.
  • Clinical guidelines advocate for routine SUDEP counseling for all individuals with epilepsy and their caregivers.
  • Patient and family desire for SUDEP risk information at diagnosis is well-documented.

Purpose of the Study:

  • To review the current state of SUDEP counseling practices.
  • To explore patient and caregiver perspectives on SUDEP counseling.
  • To examine the rationale behind current SUDEP counseling gaps and discuss prevention strategies.

Main Methods:

  • This is a narrative review.
  • The review synthesizes findings from studies on SUDEP counseling over the past two decades.
  • It examines guideline recommendations, physician practices, and patient/caregiver viewpoints.

Main Results:

  • Despite recommendations, many neurologists do not routinely discuss SUDEP.
  • Counseling is often limited to patients with specific risk factors.
  • A significant gap exists between guideline recommendations and actual clinical practice.

Conclusions:

  • Routine SUDEP counseling is crucial for informed epilepsy self-management and risk reduction.
  • Addressing physician concerns about patient anxiety is necessary to improve counseling rates.
  • Ensuring patients' right to know about SUDEP is paramount.