Neurologists Differ on Discussing SUDEP Risks Across Europe
⚠️ SUDEP: If you have concerns, speak with your clinician about risk and safety planning.
Source: Epilepsia open
Summary
This study looked at how neurologists in five European countries—UK, Norway, Sweden, Spain, and Hungary—communicate about Sudden Unexpected Death in Epilepsy (SUDEP), which is a major cause of death for people with epilepsy. Researchers surveyed 313 neurologists to gather their opinions on discussing SUDEP with patients, especially those who have just been diagnosed with epilepsy. The goal was to understand the differences in attitudes and practices regarding SUDEP communication across these countries.
The findings revealed that there were significant differences in how often neurologists talked about SUDEP with their patients. In some countries, neurologists discussed SUDEP more frequently than in others. Barriers to these conversations included limited time during appointments, concerns about upsetting patients, and doubts about whether patients could understand the risks. Notably, neurologists in the UK were more likely to engage in these discussions compared to their counterparts in mainland Europe.
Understanding these differences is important because it highlights the need for better communication about SUDEP, which can help patients and families make informed decisions. The study suggests that training and education for neurologists could improve how they discuss SUDEP, ensuring that all patients receive consistent information regardless of where they live. However, the study also has limitations, such as relying on self-reported data from neurologists, which may not fully capture the experiences of patients and their families.
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