Newly published research, funded in part by the Child Neurology Foundation, offers key insights about how and why child neurologists discuss SUDEP with their patients living with epilepsy or their caregivers.

SUDEP is the sudden unexpected death of an individual with epilepsy, when no cause of death can be found from an autopsy. In 2017, the American Academy of Neurology and American Epilepsy Society published a Clinical Practice Guideline stating physicians should discuss the risk of SUDEP with people with epilepsy or their caregivers.

This new research, available online on the open access journal Epilepsia Open, found that most child neurologists do not follow the current SUDEP Clinical Practice Guideline regarding SUDEP discussion. The paper explores the factors, attitudes and opinions associated with discussion practice including whether the child neurologist believes that talking about SUDEP with a patient or family can provoke excessive anxiety or worry and if healthcare providers have an ethical obligation to talk about SUDEP. It also discusses how time constraints and feeling sufficiently knowledgeable about the SUDEP impacts discussions.

Child Neurology Society members (~2450) were electronically surveyed in November 2017 and May 2018 regarding their practice of discussing SUDEP with patients with epilepsy or their caregivers.

Key insights From The Research

• • Most child neurologists do not follow the current SUDEP Clinical Practice Guideline regarding SUDEP discussion
  • 36% of child neurologists discuss SUDEP with at least half of patients with epilepsy or their families; 12% discuss with >90% of patients
  • Those agreeing SUDEP could provoke excessive worry were less likely to discuss SUDEP with an increased proportion of their patients
  • Feeling sufficiently knowledgeable and ethically obligated to discuss SUDEP were associated with increased discussion

Research such as this is just one of the many reasons why the Child Neurology Foundation continues to focus on SUDEP education with the goal of improving collaboration between physicians and people living with epilepsy to help improve outcomes. Learn more about SUDEP and find resources to reduce the risk of SUDEP on our website here.

*Please talk to your neurologist or physician about your individual situation, risk factors and needs.