A SUDEP and Seizure Safety Checklist has been made available in Australia to guide clinical discussions about risk factors in patients with epilepsy.

The evidence-based checklist was originally developed in the UK as a collaboration between SUDEP Action and the Cornwall Partnership NHS Foundation Trust. A partnership between Epilepsy Action Australia and SUDEP Action has now enabled the Checklist to be made available in Australia.

The interactive checklist covers primary risk factors such as frequency and type of seizures, nocturnal seizures, and medication adherence, as well as additional risk factors such as alcohol and substance use, depression and pregnancy.

It includes discussion prompts and supporting evidence for 18 risk factors.

Professor Terry O’Brien, president of the Epilepsy Society of Australia and head of neuroscience at Monash University, told the limbic that while the information in the checklist was not new, it had now been synthesised and presented it in a way that was very accessible for patients and their doctors.

He said medication adherence was probably the biggest modifiable risk factor.

“There’s no curative medical treatments for epilepsy so patients have to take their tablets a couple of times a day indefinitely and that is tough for many patients particularly younger men,” he said.

And unfortunately there was no immediate reminder for patients not taking their anti-epilepsy medications as there might be for patients with other conditions such as diabetes.

“The thing about many other conditions is that if you don’t take your insulin for your diabetes, you get sick very quickly. You get a reminder for not taking it.”

“With epilepsy, it is such an unpredictable condition that many patients will miss their tablets for a day or a week or a month and actually don’t have a seizure and so they think they can get away with it. That’s when deaths can occur.”

Professor O’Brien said seizures were the fundamental risk factor for death in epilepsy.

“If we can stop seizures, we can eliminate the excess mortality risk,” he said.

“I think the message for doctors is not to accept that your patients are continuing to have seizures. Even if it’s occasional seizures, you should be referring for specialised evaluation.”

According to Prof O’Brien, patients who are continuing to have seizures despite trying two different AEDs – about 1/3 of patients – should be evaluated for epilepsy surgery.

“And the only way to know who is suitable for epilepsy surgery is to have a comprehensive evaluation in a specialised centre,” he said.

SUDEP has become a very active area of research in the last 10 years, and there is now a lot of information about its epidemiology and its risk factors, as well as more open discussion with patients, he added.

One area of research focus is how to intervene at the point of a seizure to prevent the impact on cardiac and respiratory function that led to death.

Prof O’Brien said there is also the potential application of technology in the future – when we had devices that were very accurate at picking up seizures or even predicting seizures.