Exploring The Links Between Sleep & Epilepsy: CASTLE - Deb Pal and Paul Gringras, King’s College London, UK
Discover the CASTLE study regarding Sleep and Epilepsy - with leads Deb Pal and Paul Gringras - who share the upcoming conference - disseminating their research findings on the CASTLE project and discussing the importance of personalised approaches to sleep management and epilepsy in children.
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Paul Gringras
“The amazing thing is that it gets rid of the Tower of Babel. And it says if someone in another country decides to run an epilepsy trial on young people with epilepsy, they've got that core outcome set. So, we can start to compare apples with apples, which is a really big step forward, which we're kind of really proud of.”
00:20 Torie Robinson
Fellow homo sapiens! Welcome to, or welcome back to Epilepsy Sparks Insights.
Now sleep is more than a big deal. It’s a huge deal for our species, but for individuals and families affected by the epilepsies, the impact of not enough or poor quality sleep can be even more significant.
This week, in anticipation of the “Changing Agendas on Childhood Epilepsy Management conference” in July (this year - 2024), we get a peek into the cool paediatric epilepsy and sleep research project itself (called CASTLE ) with leads Deb Pal and Paul Gringras from King’s College London!
00:56 Paul Gringras
I'm Paul Gringras. I kind of specialise in paediatric sleep - both clinical and research in that domain. And I've been doing it for kind of, many, many years. And the really interesting thing is that there's a nice intersection between sleep and seizures and epilepsy. And we never know whether it's chicken or egg what's caused it. So, we've then had this fantastic opportunity to work through a research project together with Deb, who's a mate from many years ago.
01:28 Torie Robinson
Deb, tell us about yourself then. What's the link between you two? What's the gossip?
01:35 Deb Pal
Well, I don't know if we have long enough for all of that, but it's great to be on your famous podcast. So, I'm a professor of epilepsy at King's College London, and I'm also consultant paediatric neurologist. And as Paul said, you know, we've known each other for quite a while. And I work in epilepsy, he works in sleep “Why don't we do something together?” - that's what we thought about 7, 8 years ago. And so that's how the CASTLE Project got started.
02:06 Torie Robinson
Well, I can say as a person with an epilepsy, thank goodness we have you guys because many of us have been kind of aware, well, and many other clinicians of the link between sleep and seizures and all the other lovely shebang that comes inside one's brain. So, this is brilliant stuff. And so, you have a conference coming up!
02:26 Deb Pal
Yes, that's right, up in Manchester at a very, very beautiful venue, the Whitworth Art Gallery. So, we're taking over the entire gallery for the whole day and it's going to be open late at night till nine o'clock. So, you know, there'll be music and dancing maybe, I don't know, but a lot of art.
02:49 Torie Robinson
And what's the purpose of this? Are you trying to introduce this link and your work together at this conference? What's the content?
02:58 Deb Pal
Well, this is the culmination of our 7 year NIHR research program. We've covered a lot of ground over those years. Obviously, we had a little break for COVID. Paul, do you want to talk about the different projects in CASTLE?
03:12 Paul Gringras
As Deb said, that this is really our chance to do the most important bit with any research project, which is to disseminate it, to spread, you know, what we've learned and indeed to share what we haven't learned as well. The unanswered questions. The main thrust of CASTLE was to think outside the box and to not just count the number of seizures (which is what a lot of trials have done previously), because in fact, there are many other aspects of learning, attention, and sleep that are equally, if not more important! And so, we've really been privileged to work with patients - so both children and young people with epilepsy and with their parents, and with an expert advisory panel with adults with epilepsy. So, every step of the way, if we've kind of happened on a question, that's been co -created. It's not just being what we think is valuable as researchers. And if, and indeed, even before running some of the actual studies and some of the trials, they've been totally co-created because otherwise it doesn't work. You know, the concept of a professional designing an app to help parents manage the sleep of children with epilepsy, if you don't involve children with epilepsy and parents, it ain't going to work. But we have designed one. That's just one part of the many themes we've done.
04:38 Torie Robinson
What's it called? The app? Can we access it?
04:40 Paul Gringras
The app is called COSI, which is obviously the acronym for Castle Outcomes Sleep Intervention Castle Online Sleep Intervention.
04:45 Torie Robinson
Okay, COSI with an “I” then, yeah.
04:48 Paul Gringras
Yeah, so in short, you can't access it yet because we… the whole idea is we can…that half the people on the study have had access to COSI and half of them have just had kind of what we call “treatment as usual”. And so, it's quite important until we finish that it's not out there. And also, we need to know what bits work well and what bits need tweaking. So, for all those reasons, not yet, but we are looking for advice and support in how we can next build the next iteration.
05:19 Torie Robinson
Oh, fabulous, because there are so many apps out there. And to be honest, the majority are probably not overly great. And so, it is kind of important to get the target market, shall we say, to approve.
05:31 Deb Pal
You're right Torie. I mean the main problem is: yes, there are a lot of sleep apps out there but very few if any are evidence-based. So, this is the first one I think with clinical trial evidence and the first one for children, for young people.
05:48 Torie Robinson
I mean, of course it's targeted at children and young people, but you know, will the elderly be able to use it as well? Or older people?
05:56 Deb Pal
Well, the way we've designed it, because of the age group, the age range, children of course are not very good at managing their own sleep and they usually have parents or older adults looking after them. So, the way we designed COSI with our advisory group was sort of online training platform for parents and they go through sort of modular format. And there's a filter to begin with where the parent selects the sort of issues that they're having with their child's sleep behaviour, whether it's difficulty in trying to fall asleep or waking up in the middle of the night or whatever. So, you select the problems that you're having issues with and then you're presented with a series of modules that you can go through yourself at your own pace. And there's some sort of self -assessment questions, and so on. And lots of features and input from young people and their parents, you know, cartoons and videos, and so on. So that for that reason, it's through the parents rather than directly to young people themselves because we want to keep them off their phones in the middle of the road.
07:18 Torie Robinson
Gosh, well, yes, especially talking about sleep, hey. And so, I suppose because it's well targeted, it's not like a competition for how many acronyms can we get inside each word or anything like that. It's in layman's terms, I hope, yeah.
07:32 Deb Pal
Totally, totally child-friendly. Yeah.
07:35 Torie Robinson
Back to this conference, what's the layout? Who's going to be talking? What are you going to share with us that you're not sharing already on this podcast?
07:45 Deb Pal
I heard Paul that there are a couple of football teams up there. I don't know if you've heard about them?
07:51 Paul Gringras
I can't show any bias even though I come from Manchester and I'm suffering a lot of pain at the moment so you can guess which team I support. I mean, the people who will be talking are the heads of each of the work package. So, the way we conceptualise: it's a very big grant but you have to chop it up into individual components that all link up and together they are more than the sum. And so, for each work package, one of them was to say “What are the important, really important outcomes other than just counting seizures that matter most for people with seizures?” - first time it's been done anywhere in the world. And there's a very set way of doing it. And there were kind-of 10 key outcomes - it's all been published. And then the amazing thing is that it gets rid of the Tower of Babel. And it says if someone in another country decides to run an epilepsy trial on young people with epilepsy, they've got that core outcome set. So, we can start to compare apples with apples, which is a really big step forward, which we're kind of really proud of.
08:56 Deb Pal
Yeah, and that core outcome set was created by all the stakeholders, so young people, parents, and health professionals. So, we went through a Delphi process, and now we've got that core outcome set. But that sort of priority setting activity is something that the Epilepsy Research Institute recently did as well. I'm sure you and your audience knows all about that. We did it first, I think, a few years ago with young people.
09:28 Torie Robinson
Of course you did it first, the best of the best. So, there aren't any sort of numbers you can give us any sort of results of your study so far, just to ping out there.
09:38 Deb Pal
That would be a spoiler, a true spoiler!
09:39 Torie Robinson
Oh, you really are not allowed to give me anything. Okay, cool!
09:41 Deb Pal
We don't know either, do we?
09:43 Paul Gringras
We don't, but there are some things that we can share. So, one of the fascinating things was obviously it's one thing to have an app to have any intervention, but how do you measure it? Do you just ask the parent how the child slept, or do you do something more sophisticated? And what we've done, I think is kind of, again, really ground-breaking. So, first of all, the child wore a device called an active watch (which is like an expensive Fitbit), which enables us over a period of a week to really analyse what the sleep patterns are like, how much is getting chopped up and things like that. But, we also got the main caregiver to wear it as well! Because, what about the impact it's having? And most of the time that's the mum for various reasons. But, so, they wore it as well. And then we even did a little test of learning overnight. So, many years ago, Deb and I designed this iPad kind of set of games, which feels like a game when a child does it, but it's measuring things like reaction time, learning particular words, all the type of stuff that gets jumbled if you don't have a good night's sleep. And so, we've done this across the sample. So, we've looked in so many different ways, you know, further than just the usual questionnaire, you know, and it might be, we've done some studies before where in fact the impact on the young person has been harder to measure but the impact on the parents is: they're less tired, they're less likely to crash the car on the way to work and really important outcomes…
11:17 Torie Robinson
That's good!
11:17 Paul Gringras
Indeed, indeed!
And one of the groups was a qualitative group asking parents how it all felt - and so, again, that information is out there - and it's been incredibly well received and people have gone through the questionnaire. And so we've got not just the outcome of data, but we've got people's words, people's description, lived experience of how it's been to be part of the trial, what it's been like to do it. And it's all been thumbs up! And the main kind of outcome kind of questionnaire, everybody did. We can tell you the numbers of people who took part, can't we, but I'm going to hand that over to Deb in case I get it wrong!
12:03 Deb Pal
Well, yes, we both should have a head for numbers. I think somewhere north of 90 participants were in the trial.
12:12 Torie Robinson
Cool, and over what period of time was it?
12:14 Deb Pal
Took us about a couple of years to recruit. We had about… somewhere close to 40 sites across the UK.
12:24 Torie Robinson
And included was a sort-of, a relatively decent diversity of people included?
12:28 Deb Pal
I would say so, given the sites, yes. Obviously, we'll have the ethnicity data and the final results, but yes, every place you can think of up and down the country.
12:41 Torie Robinson
Brill, and I like that you mentioned for the qualitative research, because I think that's so important and often left out when it comes to epilepsy research. Like, I've heard people say to me “Oh yeah, but that's not very easy. You know, it's not a digit.”, and I'm like “Well, darling, I know, but when talking about quality of life and, you know, trying to understand how fellow homo sapiens feel, it's kind of important.”, right?
13:03 Paul Gringras
Well, so as part of it, what they what the qualitative kind of crew did is they interviewed parents about where they thought the professional… their meetings with professionals had left them with questions unanswered - what they thought about capacity. And at the same time, to be fair, we did surveys of professionals (paediatricians that see children with epilepsy) to say what are the barriers for you? What are the knowledge? I mean, you know, the actual knowledge and the input about sleep is, like, negligible, and it really is. The epilepsy nurses are fantastic but are much more constrained for time. So, we do get the usual story a bit about resources and one of the questions we're asking ourselves is “Can we help that process if we can provide something that's online that can be a shared experience?” - then maybe that will be a way to facilitate and make life easier for the professionals who've got all these difficulties, things they need to discuss, and empower the families with but don't always have the time to do it.
14:05 Torie Robinson
We know that in many people with epilepsy, children included, poor sleep can be a seizure trigger, right? And I've often thought, and I've said to lots of people actually “Look, maybe you don't need to be looking at just the drugs that you give your children or, you know, humans. Actually, how about preventative measures?”. And do you think that's potentially something taken from this research or something to be learned?
14:26 Deb Pal
Yeah, no doubt. I mean, there are so many factors contributing to sleep disturbance.
14:30 Torie Robinson
Mm.
14:26 Deb Pal
You know, no two families are the same. So, yeah, I mean, we need to take a slightly personalised approach.
14:42 Torie Robinson
So, if anybody's interested in coming, are we saying no to anybody? I mean, obviously your ideal guest?
14:49 Deb Pal
I think our main audience is probably going to be people who care for or manage young people with epilepsy. So, we've invited all the people who took part in the research, the psychs, the nurses, the specialist nurses, the paediatrician, and so on. We've got most of the advisory panel coming. Our advisory panel is about 25 people. So many of them are coming, so young parents, people with lived experience and so on. And we've got the patient organisations too. So, Epilepsy Research Institute, Epilepsy Action, and the professional organisations. So, Royal College of Paediatrics, the British Paediatric Neurology Association, Epilepsy Specialist Nurses Association. And we're trying to get along as many people who've been on this road as possible in terms of developing an intervention and then going along the road to translation to bring it into the NHS to scale it up for the whole country. How do you do that in a way that's sustainable and economic or preferably free?
16:07 Torie Robinson
Thank you to Deb and Paul for such a fun chat and for giving us a tease of what the “Changing Agendas on Childhood Epilepsy Management conference” in July 2024 shall hold! If you are a clinician caring for young people with an epilepsy and are interested in attending the conference - where you can meet the podcast star guests(!), the clinicians who took part in the research, the advisory panel, and the other bodies aforementioned; then contact us through the links below or via our X accounts @palneurolab, @TorieRobinson10, or @EpilepsySparks - you can see the links in the text below this recording too.
If you haven’t already, don’t forget to like, comment, and subscribe to the channel, share the episode with your friends and colleagues, and see you next week.
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Deb is joint lead of the CASTLE programme and the clinical trial itself.
Deb graduated in natural sciences and medicine from Cambridge University and holds a Masters in epidemiology from the London School of Hygiene and Tropical Medicine. He completed a PhD in Neuroscience at UCL and postdoctoral training in statistical genetics and genetic epidemiology at Mount Sinai and Columbia University Medical Centers, New York. Prior to joining IOPPN in 2009, Deb was Research Scientist at Columbia University Departments of Psychiatry and Epidemiology.
Deb’s core expertise:
Linkage, association and sequence analysis in rare and common disorders
Epilepsy genetics diagnosis and counselling
Clinical trials and broad outcomes
Speciality:
Paediatric Neurology
Links:
Email: deb.pal@kcl.ac.uk
X/Twitter: palneurolab
LinkedIn: https://www.linkedin.com/in/deb-pal-4318615
Website: childhoodepilepsy.org
CASTLE Study: castlestudy.org.uk/the-research-team/deb-pal
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Paul is working with Luci and Harriet on the sleep intervention and learning parts of CASTLE and also with Deb and Catrin on the main clinical trial.
Paul also leads one of the few UK paediatric specialist sleep clinics with a holistic approach that addresses behavioural, genetic and neurological causes of sleep disorder, in addition to commoner sleep related breathing problems. The Children’s Sleep Medicine Department integrates fully with the adult sleep service as part of the ‘lifespan sleep disorders’ group. Over five thousand children pass through the department each year.
Paul has published widely in peer reviewed journals, and books. He lectures internationally and serves on the International Paediatric Sleep Association and British Paediatric Sleep Association executive committee.
Core expertise:
Sleep and Neurodisability
Speciality:
Paediatric Sleep Medicine
Links:
X/Twitter: SleepProf
LinkedIn: linkedin.com/in/paul-gringras-89607981
Evelina: evelinalondon.nhs.uk/our-services/hospital/sleep-medicine-department/team
CASTLE Study: castlestudy.org.uk/the-research-team/professor-paul-gringras