Improving SUDEP Communication Among Epilepsy Professionals in Spain
⚠️ SUDEP: If you have concerns, speak with your clinician about risk and safety planning.
Source: Epilepsy & behavior : E&B
Summary
This study looked at how epilepsy professionals in Spain talk about Sudden Unexpected Death in Epilepsy (SUDEP), which is a serious risk for people with epilepsy. Researchers sent out an online survey to 54 professionals, mainly adult neurologists and epileptologists, to understand their views and practices regarding SUDEP discussions with patients. The survey included questions about how often they discuss SUDEP, what barriers they face, and whether they use any structured tools for these conversations.
The results showed that while most professionals recognized the importance of discussing SUDEP, very few talked about it with all their patients. Many only brought it up when there were changes in risk or when patients asked about it. Most respondents felt that they didn’t have enough time, were worried about upsetting patients, or thought the risk was low, which made them less likely to discuss SUDEP. Only a small number used structured communication tools or had access to support services for families dealing with loss.
These findings highlight a significant gap in how SUDEP is communicated in clinical settings in Spain. The study suggests that there is a need for better guidelines, training, and resources to help professionals discuss SUDEP more consistently. However, the study is limited by the small number of respondents and may not represent all epilepsy professionals in Spain, so further research is needed to understand the full picture.
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