Preventing Epilepsy Deaths: Clinician Toolkit
Assessment & Action Guide

All People with Epilepsy

All people with epilepsy need to be assessed for the following at their initial visit, annually and during life transitions.
Confirm the diagnosis and what is causing the seizures.
Clinician actions
  • Educate patients and families on seizure types and increased risk factors to be aware of.
  • Encourage use of seizure log/diary.
  • Develop a seizure action plan and prescribe rescue medications when appropriate.
  • Counsel on the importance of treatment adherence, and what to do if doses are late or missed.
  • Counsel about risk of epilepsy mortality and SUDEP.
  • Consider that some genetic developmental epileptic encephalopathy may confer a high risk of premature mortality.
Assess for treatment-resistant epilepsy, also called refractory, intractable or uncontrolled epilepsy. Treatment resistance is “failure of adequate trials of two tolerated, appropriately chosen and used anti-epileptic drug schedules (whether as monotherapies or in combination) to achieve sustained seizure freedom”.
Clinician actions
  • If treatment resistant epilepsy is discovered, consider referral to comprehensive epilepsy services.
  • Counsel on the importance of treatment adherence.
Identify epilepsy syndromes and etiologies associated with high morbidity and mortality.
Clinician actions
  • Consider referral to or consultation with comprehensive epilepsy services.
  • If the patient is seen by multiple clinician care providers, develop mechanisms for communication and coordination of care.
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