Silence Around SUDEP and Its Impact on Caregivers of Individuals with Developmental and Epileptic Encephalopathies: An International Survey

Originally published in Epilepsia Open

Sudden Unexpected Death in Epilepsy (SUDEP) is the leading cause of epilepsy‐related mortality, particularly in individuals with Developmental and Epileptic Encephalopathies (DEEs).

A recent study assessed SUDEP‐related knowledge, information practices, emotional and psychological impact, and the use of preventive measures among caregivers of individuals with DEEs across different countries. This international, cross‐sectional observational study used a structured, anonymous online questionnaire translated into 16 languages. A total of 615 responses were collected from 34 countries.

Over half of caregivers (55%) reported never receiving SUDEP information from healthcare professionals, with significant cross‐country disparities in the timing and quality of communication among those who did.

The median delay between seizure onset and SUDEP information disclosure was nearly six years. SUDEP risk was associated with substantial emotional burden, including anxiety, sleep disturbances, and concern during febrile episodes or periods of increased seizure frequency. Single caregivers reported significantly higher family impact scores.

Only 8.8% of respondents had received psychological support, despite widespread emotional distress. Preventive measures were adopted by 56.6% of families, though 74.1% considered available options inadequate. Financial support for these measures varied significantly across countries.

This study highlights critical gaps in SUDEP communication, psychological support, and access to preventive care for families affected by DEEs. The findings support the need for earlier, clearer, and repeated SUDEP communication, alongside equitable access to psychosocial support and preventive measures. Structured, system‐level approaches and international collaboration are essential to reduce caregiver burden and improve SUDEP‐related care globally.

Learn More