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Communication about sudden unexpected death in epilepsy: Understanding the caregiver perspective
Isabella K Pallotto1, Renée A Shellhaas2, Kayli Maney1
1Department of Pediatrics Duke University Medical Center Durham North Carolina USA.
Annals of the Child Neurology Society
|August 7, 2026
Summary
Caregivers want healthcare providers to discuss sudden unexpected death in epilepsy (SUDEP) risks. Most learn about SUDEP from other sources, highlighting a need for better provider communication and support resources.
Area of Science:
- Neurology
- Epilepsy Care
- Patient Education
Background:
- Sudden Unexpected Death in Epilepsy (SUDEP) is a critical concern for individuals with epilepsy and their families.
- Caregiver understanding and preferences regarding SUDEP risk disclosure are not fully characterized.
Purpose of the Study:
- To investigate the caregiver experience of learning about SUDEP.
- To determine caregiver preferences for SUDEP risk disclosure by healthcare professionals.
Main Methods:
- A survey with 24 questions was administered to caregivers of children with epilepsy.
- Free-text responses were analyzed using a rapid qualitative analysis approach.
Main Results:
- Most caregivers (91%) were aware of SUDEP, but less than half learned about it from a healthcare provider.
- Caregivers overwhelmingly preferred to receive SUDEP information from epileptologists, neurologists, or primary care providers.
- Caregivers emphasized the importance of discussing risk mitigation strategies alongside SUDEP disclosure.
Conclusions:
- Healthcare providers play a crucial role in SUDEP risk disclosure, despite caregivers often obtaining this information elsewhere.
- Interventions are needed to enhance SUDEP risk disclosure by healthcare professionals.
- Future research should focus on effective SUDEP risk disclosure strategies and their impact.
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