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New research highlights important role of Health Professionals in carefully tackling the SUDEP topic to empower patients

Research undertaken by the Royal Free Hospital has found that many people with epilepsy feel they should be told about SUDEP, and have reported positive benefits once they are aware. The study investigated the impact and consequences of discussing SUDEP. Researchers looked at a cohort of people with epilepsy and found that many patients are not informed of SUDEP even though they were aware of some risks linked to Epilepsy.  

Researchers used a questionnaire to gather information from adult patients with varied types of epilepsy. The information collected included patient  views on SUDEP, when discussions should be had, by who and their own experiences and thoughts on the topic. 

The study findings confirm that patients are still not receiving information on risk, including SUDEP, despite this being recommended in the NICE guidelines in 2004. Risk communication remains a lottery, with rates across the UK ranging from as low as 4% in some audits to 80% in others. This study also found that 15% of Neurologists informed patients of risk and that a survey done in 2005 found that the average was 31%; This shows that communication of SUDEP is still incredibly varied across the UK epilepsy services, despite national recommendations. 

It was also found that 50% of the patients surveyed already had some awareness of SUDEP. However, only 6 out of 35 knew that there were risk factors associated with SUDEP that could influence risk, and that there were steps they could therefore take to reduce their individual risk levels. Although there was reasonable awareness among the patients, of various other risk factors such as medication adherence, and steps that can be taken to reduce seizure frequency, it is concerning that SUDEP and Status Epilepticus awareness is still low.  

The authors showed concern that although the majority of patients surveyed during the study wished to be informed about SUDEP at an early stage, at diagnosis or soon after, and reported positive benefits from being told, that there appeared to be a disconnect between having knowledge of SUDEP and also understanding the steps that could be taken to reduce risk. 

They conclude that the way the SUDEP conversation occurs between patients and their epilepsy healthcare professionals could be fundamental. The study recommended that SUDEP should be communicated alongside discussing other risk information, with an emphasis on empowering patients and risk reduction. Tools such as the SUDEP and Seizure Safety Checklist, and EpSMon were flagged up by the authors as useful tools in supporting clinicians and patients in having the complex but vital SUDEP conversation in a positive way; helping to provide individualised risk awareness and prompting early interventions.  

To read the full version of the research click here
Or find out more about the SUDEP & Seizure Safety Checklist and EpSMon tools. 
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