Worldwide, approximately four million people have juvenile myoclonus epilepsy (JME). It is a common form of epilepsy, which often occurs in childhood. That is why we usually talk about juvenile epilepsy here. Treatments with medicines are possible and often successful. It is important that this group – often young patients – is closely monitored. This is possible, for example, with special epilepsy cameras in the bedroom.
Annoying side effects of medication
Despite the effective use of medication, one in three patients still suffers from epileptic seizures. Two out of three have no more attacks after treatment. However, this group is usually advised to continue taking medication for life to be on the safe side, even though that medication has unpleasant side effects such as fatigue, nausea, behavioral changes and obesity.
“When patients have been seizure-free for a few years, they often ask me if they still need the medication,” says neurologist-in-training and researcher Remi Stevelink on the UMC Utrecht website. “Most people want to take fewer pills to get rid of any side effects. Because many people with JME have attacks again after tapering off the medication, with all the associated risks, neurologists worldwide advise against trying this. So, despite the fact that there are many differences between people with JME, almost everyone gets the same advice.”
Online prediction model juvenile epilepsy
Thanks to the online prediction model that supports the treatment of juvenile epilepsy, the specialist can now see with a few mouse clicks how great the risks are of reducing medication. The model predicts the probability of how well a patient will respond to medication. It also shows which patients can taper off later with a low risk and which cannot. This predictive model is a win-win for all patients. People with a high ‘reducing risk’ then know that it is best to continue using medication, while people who are not at great risk can often continue without medication and therefore also without unpleasant side effects.
Data-analyse
To predict how patients respond to medication, and who can safely taper off medication, Remi Stevelink and colleagues from UMC Utrecht collaborated with researchers from eighteen countries. The researchers collected information about the disease course of 2,518 people with childhood epilepsy. The study showed that one third of people continue to have attacks, despite the use of medication. And that was much more than most neurologists thought until now.
Through data analysis, the researchers discovered trends and found nine different predictors of ‘attack freedom’. For example, it appears that having three different types of seizures (triggered by menstruation and psychiatric illnesses) are predictive of a poor treatment outcome. All these predictors have been processed in smart software, which can calculate the probability per person of what the treatment should look like in order to become seizure-free. The results of this study were recently published in the Lancet’s eClinicalMedicine. The forecasting program can be consulted online for free and easily, just like other models of this research group.
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