Preventing Epilepsy Deaths: Clinician Toolkit

Epilepsy is a neurological disease that doubles or triples the risk of a person dying prematurely. Important causes of death among people with epilepsy include injuries, status epilepticus, and SUDEP, some of which may be preventable with access to high-quality specialty health care and compliance with effective treatment plans.

In 2022, the Child Neurology Foundation convened a group of people with lived experience and experts in the epilepsy community from the US, Canada, and the UK to collaboratively create this toolkit, which over 50 people and 18 epilepsy organizations have endorsed.  The goal of the behavior change toolkit is to educate clinicians on how to talk with families and people living with epilepsy about addressing epilepsy mortality risk factors.

How to Make the Most of this Toolkit

For Clinicians
  1. Learn the risk categories and associated actions that medical providers can take to reduce the risk of death.
  2. Learn how to have empowering conversations about the risk of epilepsy mortality.
  3. Ask your patients to complete this form before their visit or assess all your epilepsy patients for increased risk of death during appointments.
  4. Follow the recommended actions to decrease risk.
  5. Share this handout with medical professionals so they can help save lives.
For People with Epilepsy
  1. Learn the steps to take to decrease the risk of dying from epilepsy.
  2. Download the patient handout and complete this form to prepare for your next visit with your neurologist.
  3. Schedule an appointment with your neurologist to discuss your risk and ask what you can do to decrease your risk.
  4. Share this handout with medical professionals so they can help save lives.
  5. Share this handout with caregivers and people with epilepsy.