Idiopathic Hypersomnia: Improving QoL Through Patient-Centered Care

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Dr. Rodriguez: 
Hi, today we're going to talk about Clinically Validated Tools Used to Monitor Response to the Treatment of Idiopathic Hypersomnia. I’m Dr. Alcibiades Rodriguez, Neurologist and a Sleep Specialist from the NYU Grossman School of Medicine, and I’m accompanied by my colleague, Matt Davis.

Dr. Davis: 
Hi, I'm Matt Davis. I'm a Neurologist and Sleep Specialist in solo practice in New Jersey.

Dr. Rodriguez: 
Okay, great. So, today we're going to talk a little bit about how we evaluate patients with IH. Matt, let's start. How do you evaluate a patient with idiopathic hypersomnia with excessive daytime sleepiness?

Dr. Davis: 
Yeah, you know, I think this is actually a really important topic, because, and I think you and I, on our previous conversations are often on the same page about such things, that, you know, we have some validated measures, but some are underused, and some kind of miss the big picture a little bit. You know, so we use the Epworth, of course, both in initially diagnosing but also gauging response. But a lot of us believe that the Epworth might be missing some key information and it's kind of just asking the same question eight different ways. So, you know, I definitely like to get a bigger picture of what's going on with patients, both initially and as they're being treated.

Dr. Rodriguez: 
Right, like everybody else, we start with a clinical history, trying to get some information. The Epworth, we do as standard in all our practices, and it gives you an idea, a subjective idea, of excessive daytime sleepiness.

For idiopathic hypersomnia, now we have a newer scale, we can call it that way, called the Idiopathic Hypersomnia Severity Scale, that not only measures the sleepiness but also measures other symptoms related to the idiopathic hypersomnia like sleep inertia, and so, issues with cognition, memory, and attention. What do you think, Matt?

Dr. Davis: 
I actually agree. You know, I think this wasn't a scale that I was particularly familiar with until, you know, within the past year or two I've become more familiar with it and have actually started using it more. You know, one of the key things, again, that I think the Epworth misses is these larger questions of how does your degree of sleepiness affect your quality of life in other ways? What sorts of things are you missing out on? What are you not able to do because of your sleepiness? How is it affecting your academics? How is it affecting your ability to drive? These are things that are not necessarily encompassed by just the Epworth, which again, has a role to play. So, I've been using it more, and I definitely have patients who have classic symptoms of idiopathic hypersomnia that have kind of borderline threshold Epworth numbers, but flagrantly abnormal IHSS numbers. So, certainly not saying to use it for every patient, but as a measure of some of the symptoms specific to IH and those symptoms that are often overlooked in the Epworth, more quality-of-life measures, etcetera, I actually think it's a great tool. But you know, like you said, initially, the first thing is really just talking to the patient. No scale is ever going to take the place of having a conversation. Right? And that's step one, certainly.

Dr. Rodriguez: 
So, that's correct. And the issue is, in a disease state like idiopathic hypersomnia, that can be very difficult to elucidate sometimes because it may be related, a group of diseases actually together, narcolepsy type 2 or the CNS hypersomnia, etcetera, sometimes we need further than the clinical interview that you may suspect, but this scale can help you give an idea, as you said, the burden of the disease, not just a sleepiness. So, in diseases like this that could be difficult to clarify, I think the use of validated scales will help us a little bit go further. And once we make the diagnosis for our follow-up, right, because if you’re able to combat it here and there, but this scale goes further, as we mentioned, how the patient feels. So also it's a tool to follow the treatment response.

Dr. Davis: 
Yeah, I totally agree with that. And I also find that, you know, again, if not administering the scale specifically, but at least getting at those types of questions when talking to the patient, you know, will even give the patient sometimes a little more insight into, you know, how is this hypersomnia problem affecting my life in ways that maybe they haven't thought about? And just gives them a better insight into their own difficulties or their own successes with the treatment. Yeah, I completely agree.

Dr. Rodriguez: 
That’s correct. And we take it from there, the clinical history, validated scales, and how to follow them. I think that's the take-home message that we have today.

And with that, we close today and hopefully everybody learns something. Thank you.

Dr. Davis:
Thank you.

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