AAN 2024 | The Lancet commission on epilepsy: a practical guide for non-specialists

It’s a very long publication. It’s meant to be an entire edition of The Lancet and the intent of the commissions is really as a policy statement to say; what is best practice and what should countries be requiring for care of different diseases. Epilepsy is a very common disease: 1 in 26 people have epilepsy at some time in their life. More importantly, it is a disease that when managed properly, you can actually completely change the trajectory of somebody’s life, and turn them from somebody with a disability to somebody who’s functioning with no disability, as long as you stop their seizures. We also know that the world has become much more complex in regards to the care not of the treatment-resistant patient, because a lot of treatment-resistant patients ultimately end up in the hands of specialists, but the patient who’s newly diagnosed. There’s a lot more to understand about what the optimal treatment is.

There are now 30 anti-seizure medicines out there, and how is the general neurologist going to keep up – not only with what is the best drug, what is the optimal choice in a given situation – but how does my patient and their particular characteristics affect treatment? Are they a woman of childbearing age? Are they an older individual? Are they overweight? Are they underweight? Do they have an underlying depression? There are so many different specific characteristics that in the hands of somebody who’s an epilepsy specialist, we would say use this, not that, but nobody who’s treating hundreds of conditions can keep all of that in their head. So, we are trying to give them some guidelines, including information that I think is very difficult to get even from a review article or anything else. It says, here are the conditions that your patient might have or the characteristics, here are all the drugs. What is a good choice? What is not a good choice? And for this type of epilepsy, for this seizure type, is it a first choice, second choice, or a last choice of medication?

Then there are all the other things that go into ensuring that an individual with epilepsy is well and appropriately treated. Some of those things include making a diagnosis – not only of epilepsy – because, when you’ve made that diagnosis, you also have to say what type of epilepsy, because that is really important in selecting therapy and also in the person self-managing. Like we know, in other areas like cancer, people know what kind of cancer they have, they also know what stage their cancer is, and they know what the molecular diagnosis is. So now, they can go to the internet and they can search: is there a trial for me, what’s going on with other people with that condition, how do people do long term? They can do their own searching for information. If they don’t know what kind of epilepsy they have, how can they do that? So, we want to empower people to understand the epilepsy classification enough to be able to identify what kind of epilepsy patients have and then tell them what kind of epilepsy they have.

Then the last part is just all of the other things that go into good care, such as making sure they have a rescue plan in case something goes wrong; making sure they’re prepared for an optimal pregnancy, for example; telling them – and this is a really key thing – about why they need to take their medication every day. I think it took me a long time, even being an epileptologist, to realize that for almost every other condition that people have, 80% adherence to your medication is considered spectacular. You’re doing a great job. For people who have epilepsy, if they were only taking 80% of their pills, then that would be a disaster. So, we are expecting 100% adherence from them, but we don’t give them any more information than the person who we’re only expecting 80% adherence from. It does take that extra additional effort to make sure they understand why and have tools in place to allow them. All of us have tried to take pills every day and we know we miss, and they can’t miss. So it’s another layer that they have to do to make sure that they don’t miss. Just that small little piece can make all the difference in terms of making somebody seizure-free. These are the things we’re going to be talking about in the commission report. These are the things we’re going to be talking about here in our head talk.