Silence around SUDEP and its impact on caregivers of individuals with developmental and epileptic encephalopathies: An international survey

Abstract Objective Sudden Unexpected Death in Epilepsy (SUDEP) is the leading cause of epilepsy‐related mortality, particularly in individuals with Developmental and Epileptic Encephalopathies (DEEs). The goal of this work is to assess SUDEP‐related knowledge, information practices, emotional and psychological impact, and the use of preventive measures among caregivers of individuals with DEEs across different countries. Methods An international, cross‐sectional observational study was conducted using a structured, anonymous online questionnaire translated into 16 languages. The survey assessed SUDEP‐related knowledge, emotional and psychological impact, access to information and support, and adopted preventive measures among caregivers of individuals with DEEs. A total of 615 responses were collected from 34 countries. Descriptive and inferential statistical analyses were performed. Results 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. Significance This study highlights critical gaps in SUDEP communication, psychological support, and access to preventive care for families affected by DEEs. By centering caregiver perspectives, our 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. Plain‐Language Summary We surveyed 615 caregivers of people with developmental and epileptic encephalopathies from 34 countries to understand their experiences with information about sudden unexpected death in epilepsy (SUDEP). More than half had never received SUDEP information from a healthcare professional, and many reported anxiety, sleep disruption, and significant emotional burden related to SUDEP risk. Despite these challenges, caregivers wanted clear information about SUDEP and often adopted preventive measures. Improving communication, psychological support, and access to preventive resources may help families better cope with SUDEP‐related concerns.