Clinicians ‘need to be encouraged to discuss SUDEP more openly’

Posted Feb 23 2016 in Living with epilepsy

New research has highlighted the need for further training, to encourage clinicians to give people with epilepsy more information about the risk of sudden unexpected death in epilepsy (SUDEP).

During the study, which was led by the Goethe University of Frankfurt, 5,000 copies of a questionnaire were sent to neurologists and neuropaediatricians in Austria, Germany and Switzerland. Their purpose was to obtain information about existing attitudes toward SUDEP counselling and other epilepsy risk factors, and to help identify factors that make some doctors more likely to avoid discussing these issues.

Specifically, the specialists were asked about how often they discussed: SUDEP; the risk of suicidal thoughts among people taking antiepileptic drugs; driving restrictions for people with epilepsy, and the risks the condition can pose in daily life activities. In total, 519 surveys were completed and returned.

According to the survey results, which are published in the medical journal Epilepsia, just 2.7% of the respondents said they counselled all of their epilepsy patients on SUDEP.  A total of 8.7% stated that they did so most of the time, and 20.8% reported doing so sometimes. 44.5% revealed that they rarely discussed the issue with their patients and 23.3% said they did not broach the subject at all.

In contrast, 92.9% and 81.5% respectively said they counselled all of their patients about driving restrictions and risks in daily life activities. The more sensitive topic of suicidal thoughts was shown to be discussed with all patients by 3.3% of respondents, and at least some of the time by 59%.

A lack of additional epilepsy training was often seen among those who said they chose not to discuss SUDEP, and those who rarely dealt with epilepsy patients or SUDEP cases were also less likely to offer counselling. Doctors who had been practising for less than ten years were found to be less forthcoming on the issue.

This lack of communication about the risk of SUDEP represented a discrepancy between standard practice and recommended guidelines, leading the researchers to call for better education in order to address the issue.

The study concluded: “Dissemination of knowledge among physicians about potential preventive strategies might increase the likelihood of discussion. Clinical practice guidelines are welcomed by the majority of physicians in this process.”

Click here to read more stories about living with epilepsy.

News categories