Intellectual disability and epilepsy: A patient-centered perspective

About 1 in 5 people with an intellectual disability (ID) also have epilepsy; among those with profound ID, 1 in 2 also will have epilepsy. In general, people with an ID have higher mortality rates and more chronic conditions than people without an ID; they also face significant health care disparities. Researchers interviewed people with both epilepsy and an ID to understand what they knew about their epilepsy, how they accessed care, and what epilepsy-related information they wanted to have.

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Transcript

[00:00:00] 

Nancy Volkers: Welcome to Sharp Waves. In this episode we are speaking with two researchers from Dublin about a qualitative study on intellectual disability and epilepsy. And I'm going to have them introduce themselves and then we'll get started. 

Carrie Grennan: My name's Carrie Grennan. I'm the first author on this paper. It's about how people with intellectual disability and epilepsy navigate health care and whether health literacy is accessible to them.

So I wanted to ask them directly about their health-care-related experiences, and also for their opinions on one thing that could help, which is easy-read materials and whether those would be useful to them, in trying to navigate or improve their experiences with health literacy.

Dr. Christine Linehan: Hi, I am Christine Linehan. [00:01:00] So I'm an associate professor in the UCD School of Psychology at University College Dublin. And I have about a month to go as chair of the ILAE intellectual Disability Task Force.

Nancy Volkers: Perfect. Thank you both for joining. So before we start, could one of you define intellectual disability in the context of this study? What are we talking about?

Dr. Christine Linehan: Intellectual disability, the diagnostic [00:02:00] criteria is that you have an IQ two standard deviations lower than the general population, so you'd have an IQ of 70 or lower. That was kind of the starting point, shall we say. 

The diagnostic criteria has expanded to now include that you would be two standard deviations lower than the general population on adaptive behaviors. And they are tasks around conceptual, practical, and social issues. So it could be anything from, you know, telling the time, getting up in the morning, those kind of skills, everyday skills. 

I think that's kind of superseded the IQ really. I say to my students, I wouldn't get into the business of IQ tests anymore because it's not so relevant, really. It's about your adaptive behaviors. But the third component of the diagnostic criteria is the developmental period. So you may have somebody who would present with a lower IQ or with adaptive [00:03:00] behavior issues. But they wouldn't have an intellectual disability because it didn't occur during the developmental period. So it's a developmental disability first and foremost. 

I suppose the interesting thing when it comes to research is that we don't ask people to turn up with their IQ scores and their adaptive behavior scores. What we do is very often, we go to gatekeepers and we go to support services for people with intellectual disabilities and we do a call out and say, “Would anybody like to take part in research?” 

Nancy Volkers: Got it. Okay. Thank you.

So could you talk a little bit about the overlap, the bidirectional relationships between intellectual disability and epilepsy? [00:04:00]

Dr. Christine Linehan: Yeah. The easy kind of algorithm in my head, I suppose is that they're both quite similar. So they're both in the range of about 20%. So 20% of people with intellectual disabilities will have epilepsy and about 20% of the population who have epilepsy will have an intellectual disability. 

I suppose the thing about epilepsy within the community of people who have intellectual disabilities is that it becomes more complex as your intellectual disability becomes more severe, and also the prevalence shoots up. So approximately half of the people who have severe, profound intellectual disability will actually have epilepsy. So there's quite a relationship there between the two. 

Nancy Volkers: And how does epilepsy differ, if it does, in people with intellectual disability? Is it more severe?  [00:05:00] 

Dr. Christine Linehan: Definitely yeah. Well, there is this relationship between the severity of intellectual disability and the epilepsy. And there are complexities in the presentation. So what you find for folks with intellectual disabilities is that they may present with a range of epilepsies in combination.

And there are complexities around trying to get that diagnosis correct because people may engage in behaviors that may cause confusion with a diagnosis. So absence seizures, is that just somebody who's tired with an intellectual disability? We can't necessarily tease that out because of communication difficulties.

So for the clinician, it's quite specialized work indeed. 

Nancy Volkers: Okay. So Carrie, I don't know if you want to take this, what were some previously published findings that sort of framed your study? 

Carrie Grennan: I mean, one of the main ones for me would've been [Don] Nutbeam. He did quite seminal work on conceptualizing health literacy, and he has since published some follow-ups where he emphasizes the need to work with improving health literacy in diverse populations. So he has made the point himself since his seminal research 20 years ago, that now we need to expand that outreach and that effort to improve health literacy in populations that have intellectual disability or other learning issues.

Dr. Christine Linehan: There's a huge need there for accessible materials. It's a human right, the UN Convention on the Rights of Persons with Disabilities. You know, if you are a signatory and you've ratified that, you need to be providing accessible information. So that, I know that was very dear to your heart, [00:07:00] Carrie when we looked at this, I think more generally with the research, I suppose I would also always go back and Carrie, you might remember this paper, Gloria Krahn was a great role model for me. I had the pleasure to meet her. My understanding is that she was one of the first appointees for a disability post in the CDC at a very high level. And she's a public health expert in the US and what she speaks about a lot is about public health and intellectual disability. 

And what she has explored in great detail is what she refers to as a cascade of disparities. And that is disparities that occur for people with disabilities within the health care system. And those disparities occur the entire way through, from differences in prevalence of conditions, as we've seen with epilepsy, differences in access to health care, so many of the people with intellectual disabilities and [00:08:00] epilepsy will find it very hard to get somebody who has the sufficient skill as a neurologist to support them, or a psychiatrist.

There are differences in health screening. There are differences in outcomes. And a lot of that is to the medical profession to look to and to examine how they can deal with that. And there are huge developments in Australia and the US on building medical curricula with the content of intellectual disability for medical students.

But yeah, I think that that cascade of disparity, that that's huge in intellectual disability. We know that people with intellectual disabilities, they die 16 years earlier than the general population. They experience huge prejudice within health care systems. I mean, that's well documented. In 2023 in the US, intellectual disability has now been, and disability in general has now been, recognized as a health disparity population.

I think a lot of that work came towards us [00:09:00] in terms of the specifics of intellectual disability and epilepsy, where those rates of SUDEP, the prevalence, the complexities, and the challenge of trying to find appropriately skilled people to support people with disabilities. One of my colleagues, professor Rohit Shankar in the UK, he is doing a lot of work in this area, trying to address that deficit. 

So all of that kind of came together, but more so than looking at the medical profession, we really wanted to get the voice of people with ID because I think that that is largely absent in the field of intellectual disability and epilepsy, I think that voice was really absent and it was something, Carrie, that I know that you were passionate about was to bring that voice to the fore.

Carrie Grennan: Yeah, absolutely. I mean, that's the crux of most research I do now, I always like to go directly to the people that the research is about rather than proxy reports or professional opinions. The [00:10:00] lived experience piece is really where my interest lies.

Dr. Christine Linehan: One of your predecessors, Carrie, I don't know if you met her. Emma Casey. She conducted interviews with people who worked, so neurologists and psychiatrists who worked with people with epilepsy and intellectual disabilities, and that is a published paper now. And some of the themes that came out of that were quite extraordinary. What people had heard, when they reported back to us, they had heard things where physicians were uncomfortable in situations where they felt they couldn't cure someone.

We are trained to cure. That's what we do, and if you present us with a patient that we cannot cure, we can certainly, you know, reduce the severity of seizures, but we can't cure. They find that very difficult because they're not trained for that, and they've openly said that, and I think that's really important. 

And some of them spoke about the need for [00:11:00] much more partnership where you have populations of people. The physicians said, “We're not coming across patients with intellectual disabilities.” So where you have that kind of invisible population, they were asking for partnership, that they need to learn from the intellectual disability community about methods of communication, about methods of support, because people with intellectual disabilities are actually being turned away from health care providers who say, “I'm sorry, we don't have that expertise.”

And when you look at the level of need that's there, that’s really something that needs to be addressed rapidly. 

Nancy Volkers: Yeah. So this seems like a great time for Carrie to talk about the methods of your study. So who did you speak with and how did you find them and what did you ask them?

Carrie Grennan: So myself and Christine together approached gatekeepers at different national disability support services and asked them to think [00:12:00] of and approach any people within their service network that have ID and epilepsy and would talk to me about their experiences with healthcare. All of my participants were adults with ID and epilepsy.

And I tried to meet them where they were at in terms of their preferences for how I spoke to them. So some of them chose to meet via Zoom, whereas some of them wanted to meet out in public. Some wanted to meet in their homes, which would be assisted care kind of living situations. And so I met with people in a variety of environments and I also encouraged them that if they wanted to bring someone as a support person with them that they could, and I think all participants did opt to bring a support person along with them. The support person was just there to try and facilitate their communication rather than speak for them. 

Nancy Volkers: Great. So could you give examples of some of the questions you asked? Were they open-ended questions? What were you looking for? 

Carrie Grennan: Yeah, so it was a [00:13:00] semi-structured interviews that I did and then thematically analyzed the responses. But they were all open-ended questions. I started with questions like, “Can you tell me about your epilepsy? Do you take medication for your epilepsy? Do you know what that medication is?”

And then I moved into, “Who do you speak to about your epilepsy?” And if it was a doctor, if it was a family member, I would then interrogate that further. “Why do you prefer to speak to them about your epilepsy? Is there anyone else you speak to about your epilepsy as well?” Just to see where these people with ID were getting their epilepsy-related information from.

Then at the end, I would've had questions in there related to easy-read materials. The consent form and the invitation to take part in the study were developed under Christine's guidance in a format that was easy-read. And so within the interviews I use that example and I said, “Is there something you want to learn about epilepsy?”

So those were the [00:14:00] kind of things I was getting at and seeing what intellectually disabled people themselves thought about easy-read format by using the example of the consent form and invitation to participate in research as an example of what those materials could look like for them in practice.

Nancy Volkers: Great. And what were your findings? What were some of the most important findings in your opinion? 

Carrie Grennan: There were three main themes that came out of the thematic analysis itself, but when you consider them overall in tandem with each other, the main takeaway was that these people really want to be involved in their health care and they're consistently facing barriers when they try to be involved in their health care. And that comes from a multitude of directions. 

It can come from practitioners who don't understand how to facilitate their involvement, or practitioners who just defer to a family member or caregiver rather than trying to engage the person with ID and [00:15:00] epilepsy, even though it's their appointment and their time with their medical practitioner, they just defer to whoever there with them.

And then also, the materials that are out there and the resources that are out there can be complex to navigate. They can have complex words that aren't defined and properly explained ahead of being used within materials about epilepsy. 

And then there's barriers in terms of when they do express a need or a want within their care, it just being disregarded or not considered, and they just have to fight that extra bit harder. Even when they are asked, or even when they do express an opinion or want within their care, it's not given the weight it deserves.

Nancy Volkers: So health care is complex enough as it is for someone who does not have an intellectual disability. And it sounds like it's even more complex on many levels for people who have intellectual [00:16:00] disability and epilepsy. Were there any anecdotes or any stories that you wanted to share that could illustrate any of those issues that you mentioned? I know there were some in the paper that I thought you might want to highlight, but if not, we can— 

Dr. Christine Linehan: --Carrie, can I jump in with one? I mentioned it in a lecture yesterday. You’ll be delighted to know I'm now quoting your papers in my lectures and I just think this quote is quite important.

It was really well caught by you. so it's a quote from the paper. “She described knowing that her epilepsy was changing and being told by her doctor that it was just anxiety.” And that is a phenomenon that we see a lot, and it's called diagnostic overshadowing. 

And what it is, is that you have physicians who cannot see past the intellectual disability and presentations of a condition. If the person did not have an intellectual disability, it would be picked up, identified and diagnosed. But because you have an intellectual [00:17:00] disability, it's put down to your intellectual disability.

That happens a lot with mental health difficulties. Somebody presents with mental health difficulties and it's, “Oh, that's just because this person has an intellectual disability.” It's not actually depression or whatever it might be, and here we have it. She described knowing, so she described knowing that her epilepsy was changing and being told by her doctor that it was just anxiety. 

We really need to move past this and we really need to educate physicians that it isn't just anxiety. You need to push a bit further and you need to do the same investigative work you would do if this person did not have an intellectual disability.

Carrie Grennan: One of the underlying things throughout everyone's accounts was that they face this presumed incompetence, which is against the law here, you assume competence within Ireland. And it's certainly not up to, you know, your epilepsy neurologist to decide that [00:18:00] for you. 

I think the result of that assumed incompetence for these people was that practitioners don't even take the time to consider whether people with intellectual disability would be interested in knowing more about their condition or interested in being involved in their health care planning, or strategies for managing their epilepsy. They just assume that people with ID are not interested in this at all.

And I think the findings of this study where, you know, one of the main themes is “We want information,” they want to be involved, they want to be heard, they want to be listened to, and it's just not happening in practice.

Nancy Volkers: So what are some of the barriers to that? Training has been mentioned and health literacy has been mentioned. Are there studies or initiatives or ideas about  how to improve the situation? 

Dr. Christine Linehan: I think at [00:19:00] national level, certainly, Australia's taken a huge jump here, so they've spent a considerable amount of both time and money developing a national roadmap to improve the health of people with intellectual disabilities. And it's freely available. There's an entire medical health care curriculum there, and we're looking not just at presentations of conditions, but we're looking at the underlying problems, which is about, as Carrie has said, the presumption of a lack of capacity.

Not providing reasonable accommodations, not communicating with the person directly, just some of the simplest things would make such a big difference here. 

In the United States, you have the development of what's been described as core competencies that are required by physicians to support patients with disabilities.

Nancy Volkers: Thank you. Carrie, are there next steps for [00:20:00] you in terms of this research? Are you going to continue it or what are your thoughts? 

Carrie Grennan: For now my involvement in the ID and epilepsy space is on pause because I'm doing a PhD that centers around, as an autistic woman, I am looking into the experience of autistic girls, because there's late diagnosis and prevalent masking and things that need to be looked at there. But it's a very similar group of people who are often disregarded or overlooked within the research space. 

But I think in terms of what I feel should be done next within the epilepsy space is co-designing and co-producing these easy-read materials that people with intellectual disability want. And in broader intellectual disability and epilepsy research, implementing and asking people with ID and epilepsy to take part more, eliciting their voices directly needs to happen more, co-producing research [00:21:00] that would have an impact on them, that their interest in happening needs to happen more often. Rather than trying to speculate on, I suppose, a practitioner's ideas of what should come next, ask people with ID directly. What should come next in terms of what we look into research wise? 

And if I may speculate, I mean the people in this study were so honest and candid with me, who is functionally a stranger and who they knew was just a research student. My research may not be coming from a place where it's already, where I've already got a reputation, let's say, to make an impact. And I suppose their honesty with me and their willingness to speak to me just could be indicative of how little they're listened to by anyone else who could have an impact, and I would love to see people who are not students make the effort to include people with ID in their studies.

Yes, there are extra considerations you need to [00:22:00] make ethically and methodology wise. Make them. If you're going to be working for and on behalf of people with ID, make that extra effort to involve them in the work because that's who you're working with and for.

Nancy Volkers: Excellent. 

Is there anything else that either of you would like to mention about the study or the field or challenges or solutions? 

Carrie Grennan: I mean, I'd like to thank the people that took part. And just to say that it is a privilege to work with minority communities in research, and it should be seen as that rather than an inconvenience or extra effort on the part of researchers.

Dr. Christine Linehan:  If there was one thing I was to ask, I would really like the [00:23:00] ILAE to make a commitment about the visibility of intellectual disability at their conferences. I think it was the American neurology conference, or maybe it was the American Academy of Developmental Medicine and Dentistry, one of those very large organizations in the US has made a commitment that intellectual disability will be very well represented at all of their congresses.

I don't see that commitment yet from ILAE. We're talking about up to 20% of patients with epilepsy have an ID. That just isn't reflected in what you see at conferences, and that's evidenced by Rohit Shankar. He's actually looked back and he made a really nice comparison where he looked at epilepsy studies in children and then he looked at epilepsy studies in ID, thinking they'd be kind of comparable in terms of their visibility, and it was far from that. 

So the [00:24:00] underrepresentation of intellectual disability in research, at conference presentations, in academic papers, we really need to be doing better. This is a population of people that you cannot put to the fringe. They have more complicated needs. They need more support, they need more advocacy so that their own voice is heard.

I think we've quite a long way to go.