Young people with epilepsy want early information about the risk of sudden death that is associated with their condition, research shows.
They want to be told about the risks soon after their diagnosis but not at the first consultation, the study found.
Being informed about their risk does not create long-lasting anxiety in younger people, contrary to doctors’ fears.
It is the first time epilepsy patients have been asked in such detail for their views on the subject. Researchers say their findings will help to inform best practice in counselling patients.
Each year, roughly one in a thousand people with epilepsy will die suddenly with no obvious cause.
The phenomenon is known as Sudden and Unexpected Death in Epilepsy (SUDEP) and it is responsible for around 50 deaths in Scotland each year. Young people aged 16-30 are most at risk.
National epilepsy guidelines recommend that patients are given information about SUDEP but doctors had feared that it may create anxiety in a group of people who are already prone to depression.
Researchers - from the University of Edinburgh, NHS Lothian and Epilepsy Scotland - carried out detailed interviews with 27 young adults with epilepsy for their views.
They found that most patients view SUDEP as being outside of their control. Many were either untroubled by the information or worried about it for a brief period before carrying on as normal.
For the majority of participants, being told about SUDEP did not have any effect on whether they take their medication regularly, the research found.
We hope these findings will help doctors to discuss SUDEP with their patients. However, we still urgently need a better understanding of SUDEP and its possible causes so that we can best advise our patients on how to minimise their risk.
The study was commissioned by the Scottish Government following a Fatal Accident Inquiry into the deaths of two teenage girls in Fife that was published in August 2011.
The inquiry highlighted that a better understanding about SUDEP may have encouraged the girls to stick to their medication and may have prevented their deaths.
The findings are published in the journal Epilepsy & Behavior.