What is “Consciousness” When It Comes To Seizures?! - Dr. Kaley Marcinski Nascimento, Washington University in St. Louis, USA
What is "consciousness"?! Paediatric resident Dr. Kayleigh Marcinski Nascimento explains the significance of a new research study aimed at understanding the terminology surrounding “consciousness” during focal (formerly known as partial) seizures; emphasising the need for clear communication between clinicians and caregivers. The discussion also covers the importance of diverse input in research and how the data collected will be used to improve patient care. Link to the study, transcription, and more info on Kaley are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Kaley Marcinski Nascimento
“We want providers to be able to communicate with each other across all languages so that we're all using the same terminology when it comes to patient care, as well as when providers are communicating with patients and families that everyone's on the same page and speaking the same language and have the same understanding…”
00:20 Torie Robinson
What is “consciousness”?! Heaps of people lose some or full consciousness during a seizure but heaps of people don’t. Plus, heaps of us think we or the person we care for has lost consciousness during a seizure but they haven’t - or vice versa! So, what even IS consciousness?!
Dr. Kayleigh Marcinski Nascimento is here to explain to us a new research study - for people with epilepsy and their caregivers - aimed at understanding the terminology surrounding “consciousness” during seizures and establishing clear communication between clinicians, people with an epilepsy, and caregivers. Get ready - you could potentially be involved in this study and your perspective is so important!
If you’re new and you haven’t done so already, please do like and comment on this episode and subscribe to our channel, so that we can get way more people learning about and developing a factual understanding of the epilepsies!
01:16 Kaley Marcinski Nascimento
So, I am Dr. Kayleigh Marcinski Nascimento. I graduated from St. Louis University School of Medicine in 2024 and did a research year after that working as a clinical research coordinator and postgraduate research fellow at Washington University in the paediatric epilepsy department. And now I'm starting paediatric residency in San Antonio.
01:40 Torie Robinson
Fabulous, and why focus on the epilepsies as a paediatric neurologist?
01:43 Kaley Marcinski Nascimento
Initially I was very interested in paediatric cardiology and I met my husband who is in adult epilepsy but he also treats a lot of childhood epilepsy syndromes, Dravet Syndrome, Lenox-Gastaut syndrome. And so, I started to see the world of epilepsy through his work and he taught me a lot of things and I just started to fall in love with epilepsy and EEG and so that has been my focus for the past year to start to learn that. And I hope to continue to train in neurology and EEG in the future.
02:16 Torie Robinson
But, you are not solely on the clinical side, you're also a researcher and there's a new, active research questionnaire out!
02:25 Kaley Marcinski Nascimento
So, I am working on a project with Dr. Sándor Beniczky out of Aarhus University in the Filadelfia Danish Epilepsy Center, as well as my husband, Fabio Nascimento. We are doing a study to look at patient and caregiver understanding of the word “consciousness” in the new International League Against Epilepsy or ILAE Terminology for Seizures.
02:51 Torie Robinson
Why is there a new terminology for seizures, first of all?
02:53 Kaley Marcinski Nascimento
This change is coming from the initial terminology in 2017 included the term “awareness”. It is being changed to the term “consciousness” in order to be inclusive of both awareness and responsiveness.
03:11 Torie Robinson
And so I guess… (and this is all part of the questionnaire) the words “awareness” and “consciousness” can be interpreted in different ways, right?
03:19 Kaley Marcinski Nascimento
Correct. And so the main focus is on primary English speakers or first-language people whose first language is English, their understanding of the term “consciousness”. ‘Cause it can be easily mistaken that a person has to be passed out on the floor. The term “passed out” is frequently used by patients and caregivers in order to have impaired consciousness. But consciousness includes both awareness, which is your ability to recall or remember the events, and responsiveness, which is your ability to interact and respond during a seizure.
04:00 Torie Robinson
Ok, so, I have an example: I know somebody who was having focal seizures and then I wasn't sure if she was aware during the seizure or had some lack of awareness during the seizure and she could talk and then she couldn't talk. When she was talking to me during the seizure, she sounded a bit “funny”, but wasn't “herself”, if you like. And then, afterwards, she had a very limited recollection of what had happened during the seizure. She remembered some things, but not all things. So, would you say that, or would we say (with the new definition) that she had lost consciousness or partial consciousness?
04:37 Kaley Marcinski Nascimento
Yeah, so in your example, it sounds like she was definitely having a focal seizure (which is the situation that we apply this terminology). And her awareness; it sounds like she was not able to completely recall all of the events, so that would be impaired. And it sounds like her responsiveness was also atypical or not normal during her seizures. So that would be impaired responsiveness as well and would be classified as focal seizures with impaired consciousness.
05:08 Torie Robinson
No that makes complete sense. Alright, so. I think that's a really good example for some people who might have experienced the same or have witnessed something they appear to be similar. Also worth noting is that sometimes I think we think that people are fully conscious because they're talking, right? And it doesn't necessarily mean that they know what they're what they're doing, even though it seems like they do at the time. Is that right?
05:32 Kaley Marcinski Nascimento
That can be possible. A limitation of the old terminology would be when you're in the epilepsy monitoring unit and you're having seizures; when the staff comes in to test the patient, that's often just testing for responsiveness as they ask questions and see if the person can respond, but not always was awareness tested to see if they were actually able to recall the events of the seizure. So, “Consciousness” nicely encompasses both aspects and encourages both providers and patients to pause and think about both.
06:11 Torie Robinson
And perhaps reflect upon things afterwards, speak to the individuals, see what they recall or don't recall. Don't just, you know, try and find out straight after a seizure post-ictal, but look at things later on as well, right.
What is the purpose of this paper? Is it to get clinicians and families speaking the same language, having the same understanding, or being able to communicate more effectively in an appointment?
06:37 Kaley Marcinski Nascimento
All of the above, exactly, what you just said. We want both providers to be able to communicate with each other across all languages so that we're all using the same terminology when it comes to patient care, as well as when providers are communicating with patients and families that everyone's on the same page and speaking the same language and have the same understanding so that patients can get the best care - because care, depending on if a patient has preserved or impaired consciousness, that will impact their treatment.
07:14 Torie Robinson
And I guess this is another example of why… of how important, in effective care, input from people who have observed seizures or the behaviours of a patient is, right?
07:29 Kaley Marcinski Nascimento
Exactly.
07:30 Torie Robinson
Often we don't know what's happened, especially if we have impaired consciousness!
07:34 Kaley Marcinski Nascimento
Very important to hear both the perspective of the person experiencing the seizure as well as those who observe. For this survey, we are only going to survey patients and caregivers because we want to know from the people that are experiencing seizures more frequently and the people that are observing these seizures more frequently, kind of. their understanding and their application of this language.
08:03 Torie Robinson
And I guess this could also be useful for people over a great period of time because seizures can change over time as well, right? So what you might think is, they just look a little bit different or their behaviour seemed a little bit different on this point, they just - I say “they”; disregard it, we all do it to a degree - but, I suppose if you end up speaking the same language as your clinician, you can mention these things and it can be identified if this little change is significant or not, right?
08:27 Kaley Marcinski Nascimento
‘Cause you may have a patient that has multiple seizure types. And so, we actually ask a little bit of a brief seizure history to get that input of what the patients are experiencing and what the caregivers are observing to have a little bit of context of who exactly is it that we're speaking with. Are these patients and caregivers that are experiencing 1 seizure a year (that maybe they're not exposed to this as frequently and it may be harder to apply this terminology when you're not experiencing this as frequently) versus patients and caregivers who are experiencing this on a daily basis/multiple times a day. That can look very different.
09:11 Torie Robinson
And is the questionnaire open to people or families affected by say, Dravet, Ring20, LGS, other rare epilepsies rather than more common epilepsies?
09:23 Kaley Marcinski Nascimento
Yes, any person that has epilepsy or is a caregiver of a person with epilepsy is welcome to complete the survey. As far as demographics, we ask where people are coming from so we have an idea of who is completing the survey so that we don't have a narrow population from one location that may have a better understanding than maybe another location or have a different definition that they apply to the term “consciousness”. So, we want to have as broad a population of people with different experiences with seizures, different experiences in their culture, completing this survey, so that we can see how everyone interprets this terminology.
10:09 Torie Robinson
We want a greater variation and representation of homo sapiens, I guess.
10:15 Kaley Marcinski Nascimento
Exactly. Yeah, we started in the, we started the survey in the United States and have been fortunate to cover almost all of the 50 states. We're missing a couple but it's been good to get a very diverse, very diverse respondents.
10:34 Torie Robinson
What's the cutoff date for this?
10:35 Kaley Marcinski Nascimento
So, we hope to have it done a month from when we get the podcast out and start distributing internationally.
10:43 Torie Robinson
So, how is the data from this going to be used? Is it anonymous? Will the results be published? And yeah, what will happen?
10:50 Kaley Marcinski Nascimento
So, all of the data is anonymous when someone goes to complete the survey. We don't collect any personal information. We don't ask for email names or any identifying information. And then only the answers come back to us as a random number. And all of the data that we collect, we will be publishing a paper. The most important thing with all of the data that we're collecting is we want to have a good idea of who it is that we are surveying. So, when we ask about demographics, we want to make sure that we have a good representation of people from all walks of life, all backgrounds, all cultures. And if we don't, then we at least know who it is that we are speaking with. And then we can also identify who it is that we haven't spoken with or haven't gotten input from, to address in our limitations or try to investigate further in the future.
11:53 Torie Robinson
Which is crucial in a paper. The results of this, will this be shared with a broader network of clinicians, with ILAE, you know, how will you go about sharing this?
12:03 Kaley Marcinski Nascimento
So our goal is to publish our findings in a research journal, so, that will help spread the word. And, ideally, we'll be able to also share at upcoming conferences and epilepsy, possibly the International League Against Epilepsy Congresses. We'll see where everything goes!
12:25 Torie Robinson
The questionnaire is available on the Epilepsy Sparks website, but we will share it all over social media and everything too, of course. Thank you so much, Kayleigh.
12:34 Kaley Marcinski Nascimento
Yeah, thank you so much, Torie.
12:36 Torie Robinson
Thank you to Kaley and the rest of the team for understanding and valuing the perception of terminology when communicating with individuals and their families!
Take part in the study via surveymonkey.com/r/epilepsytalkwork (all one word) and learn more about Kaley on the website t-or-i-e robinson.com (where you can access this podcast, the video, the transcription of this episode, and of course, a link to the questionnaire).
If you’re new and you haven’t done so already, please do like and comment on this episode, and subscribe to our channel so we can get way more people learning about and having a better, factual understanding of the epilepsies, around the world!
See you next week!
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Kaley Marcinski Nascimento, MD, graduated from Saint Louis University School of Medicine in St Louis, Missouri in 2024, after which she worked as a post-doctoral research fellow and clinical research coordinator in paediatric epilepsy at Washington University in St Louis Department of Paediatric Neurology. She is now starting Paediatric residency.
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LinkedIn Kaley Marcinski Nascimento
PubMed Marcinski Nascimento KJ