People who have lost a relative because of sudden unexpected death in epilepsy (SUDEP) believe neurologists should discuss the risk of SUDEP with patients.
A new study by RamachandranNair and colleagues interviewed 27 bereaved people, who had lost a close relative to SUDEP. The study authors wanted to find out their opinions on doctors discussing the risk of SUDEP with people with epilepsy.
Around 600 people die of SUDEP each year in the UK. There is a general debate about neurologists discussing SUDEP with patients. SUDEP is rare and doctors are wary of panicking people unnecessarily. On the other hand, it is important to make people aware of all the risks that come with epilepsy.
The research revealed that most people thought the information should come around the time of the epilepsy diagnosis. The people involved in the study said that they believe that neurologists should discuss SUDEP face-to-face and provide written information.
The participants in the research said they think that the information delivered should include the potential risk factors and possible preventative strategies. They also believe that people should be told about the rarity of SUDEP and that counselling should be provided where necessary, according to the study.
The research is published in Epilepsy & Behavior.
The Epilepsy Action website has more information about SUDEP, causes, risks and possible prevention.
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