Preventing Epilepsy Deaths: Clinician Toolkit

The Role of Clinicians: Three Steps to Save Lives

Epilepsy is a burdensome neurological disease that doubles or triples the risk of patient mortality. 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.

Below is a summary of the role of clinicians in preventing epilepsy deaths. Detailed information can be found in the assessment and action guide, an empowering conversation guide.

Step 1: Assess

Understand seizures and syndromes associated with increased risk of mortality

Inquire into lifestyle, occupational/recreational activities or major life changes that increase the risk of seizures and accidents

Assess supervision during seizures (especially nocturnal seizures) and in dangerous environments such as water

Assess for high-risk medical comorbidities (including mental health) using standardized instruments and labs
Barriers to quality care include
  • Complications with medication management and adherence
  • Access to comprehensive epilepsy services
  • Frequent use of emergency services
Step 2: Act

Review all medications at each visit

Develop and review the treatment plan and treatment options

Order genetic testing if there is a worsening of seizures or diagnostic uncertainty

Routinely evaluate the need for laboratory studies to screen for comorbidities and long-term complications from medical therapies when appropriate
Additional actions to consider
  • If the patient is not responding to treatment, refer to specialists as appropriate
  • If multiple clinical care providers see the patient, develop mechanisms for communication and coordination of care
  • Develop a Seizure Action Plan, and include rescue meds when appropriate
Step 3: Empower

Educate people with epilepsy and their caregivers

Describe seizure types and risk factors for increased mortality

Explain comorbid conditions and symptoms to watch for

Regularly evaluate and explain the individual’s current risk factors for death and actions they can take to reduce risk
Additional actions to empower people
  • Ask about barriers to care and suggest solutions
  • Provide resources, including connection with appropriate advocacy organizations
  • Provide handout to people with epilepsy and their caregivers