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Keeping patients with epilepsy safe: a surmountable challenge?

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Discussions about sudden unexpected death in epilepsy (SUDEP) are crucial for people with epilepsy (PWE). A new checklist and telehealth approach significantly increased SUDEP risk discussions from 10% to 80% in PWE.

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Area of Science:

  • Neurology
  • Quality Improvement
  • Patient Safety

Background:

  • Sudden unexpected death in epilepsy (SUDEP) is a significant concern for people with epilepsy (PWE).
  • Discussions regarding SUDEP risk and prevention are inconsistently documented, despite existing guidance.
  • Current approaches to SUDEP discussions lack structure and evidence-based, person-centered strategies.

Purpose of the Study:

  • To implement and evaluate a structured approach for discussing SUDEP with newly diagnosed people with epilepsy (PWE).
  • To improve the documentation rate of SUDEP discussions within intellectual disability teams.
  • To enhance patient and carer knowledge and awareness of SUDEP risk factors.

Main Methods:

  • A quality improvement project was initiated, involving the development and implementation of a SUDEP risk factor checklist.
  • The checklist was refined and subsequently utilized via telehealth consultations with patients and their carers.
  • Data was collected pre- and post-intervention to assess the rate of recorded SUDEP discussions.

Main Results:

  • The documentation rate of SUDEP discussions increased significantly from 10% to 80% following the intervention.
  • Telehealth, utilizing a checklist approach, proved effective in facilitating these crucial conversations.
  • Positive feedback was received from patients, carers, and healthcare professionals.

Conclusions:

  • A structured, checklist-based telehealth intervention markedly improved SUDEP discussion rates in people with epilepsy (PWE).
  • This approach enhances patient and carer engagement and knowledge regarding SUDEP.
  • Future development includes a mobile application for ongoing risk monitoring and patient empowerment.