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.
1
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.
2
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.
3
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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