The increased frequency of comorbidities among people with narcolepsy should be thoroughly reviewed while creating individualized management strategies. Comorbidities that are more prevalent in patients with narcolepsy include psychiatric and sleep conditions, as well as cardiovascular and cardiometabolic conditions. Hypocretin dysfunction in patients with narcolepsy may partially explain the increased risk of certain comorbidities in these patients. An increased prevalence of cardiovascular and cardiometabolic conditions, such as hypertension, obesity, diabetes, and hypercholesterolemia have been reported in people with narcolepsy compared with matched controls. One interview study of 320 patients with narcolepsy and 1464 age-matched individuals from the general population identified that the odds of heart disease in patients with narcolepsy (5.9%) were twice that compared to the age-matched general population (2.9%) (AOR, 2.07 [95% CI, 1.22 to 3.51]). By an average age of 38 (mean age during study), an increased incidence of cardiovascular comorbidities has been observed among patients with narcolepsy compared with matched non-narcolepsy controls.
In episode 3, listen as Sleep Review’s Sree Roy and neurologist-sleep specialist W. Chris Winter, MD, discuss:
- What comorbidities do you typically see in patients who are newly diagnosed with narcolepsy?
- What about comorbidities that tend to develop over time in people with narcolepsy?
- What health conditions do you screen for when you have a patient who is newly diagnosed with narcolepsy?
- How, if at all, does the existence or emergence of comorbidities impact decision making?
- Can you share any best practices for monitoring the emergence and management of narcolepsy-related comorbidities?
- What other specialists and healthcare professionals do you recommend sleep physicians develop reliable referrals with to adequately manage comorbidities in their patients with narcolepsy?
- Are there any particular screening tools such as specific questionnaires that you’d recommend to other sleep physicians for this demographic?
Sree Roy: Hello and welcome. I’m Sree Roy with Sleep Review, and I’m thrilled to be here with neurologist-sleep specialist W. Chris Winter, MD. Dr. Winter is author of The Rested Child and The Sleep Solution.
This episode is sponsored by Jazz Pharmaceuticals.
Today we’re chatting about comorbidities linked with narcolepsy.
What comorbidities do you typically see in patients who are newly diagnosed with narcolepsy?
Dr. Chris Winter: Thanks for having me, Sree. We see a lot of things.
When you think about narcolepsy, it’s often what we think of, or at least thought of, as being a diagnosis of relatively younger people: high school, college age students sort of make up the majority of the people we see. But really anybody of any age can have it.
And we’ve known for a long time that individuals who have narcolepsy seem to be more predisposed to things like sleep apnea, other sleep conditions, other psychological conditions like depression and anxiety.
But, as more and more research comes out about the pathophysiology of narcolepsy and also the comorbidities that go along with it, we are seeing more distressing things like cardiovascular disease, heart attack, stroke, hypertension, obesity.
These relationships that we’re seeing between narcolepsy and these other conditions have really caused a lot of people who treat sleep disorders like I do, both in adults and young people, to really change the nature of the conversation that we’re having around the disease state.
Sree Roy: What about comorbidities that tend to develop over time in people with narcolepsy?
Dr. Chris Winter: Yeah, that’s the more problematic one.
And I should probably say from the outset that an association doesn’t necessarily mean that it’s causal. A lot of people who carry matches in their pockets or lighters in their pockets have lung cancer. It doesn’t mean the lighter is causing lung cancer, but the lighter goes along with something else that may go along with something else.
So I think it’s important to say from the outset, but when we look at these numbers, they are to some degree pretty large. And so I think that when we think about this, we’re often dealing with an individual early in their life and early in their health history.
So it is difficult to know exactly what to do about that. So I think that what most doctors are doing now, and certainly what I’m doing, is having a little bit more of a robust conversation. And that’s not the easiest thing to do. Narcolepsy is a bit of a confusing disease state as it is. It’s going to take me 15 minutes to convince people that narcolepsy is not walking down the sidewalk and suddenly falling over in a comical way asleep at the corner of 57th and Broad.
So to me, I think that it’s difficult to fit in all the information and undo all the weird understandings that people have of narcolepsy. And now we’ve added this other layer of, oh by the way, this may be a little bit more than just you being sleepy: it might really impact your likelihood and ability to lead a healthy and long life. And so that needs to get worked into the conversation in some way. And talking to a 26-year-old who’s got a biochem final in two weeks, you wonder sometimes how much they’re really thinking about how their blood pressures going to be when they’re in their late 50s.
Sree Roy: As narcolepsy is associated with an elevated risk for several comorbid medical conditions that may impact their management plans, what health conditions do you screen for when you have a patient who is newly diagnosed with narcolepsy?
Dr. Chris Winter: Yeah, well, probably screening for most of them. When they sit down and fill out their paperwork, probably some of the most important things are: What other medical conditions are you dealing with? What medications are you taking?
So right off the bat, we’re going to see if an individual has been diagnosed with hypertension. We check blood pressures when patients come to the clinic. It doesn’t necessarily mean you have or don’t have high blood pressure, but we’re always looking for these types of things.
I think that our concern and our suspicion of these medical conditions has just been elevated recently. Any 22-year-old who says she has hypertension, I’m going to pay attention to. But I think what we’re really doing now as narcolepsy doctors, sleep doctors, the best thing about what I do as a sleep physician is I forge a relationship with a patient. And that’s what’s fun. I always tell patients all the time, the sleep study/the diagnosis is the beginning of the process, it’s not the end of the process.
Which, that’s one of the things we always tell patients about: if your doctor is viewing the sleep study and the CPAP, or the sleep study and the diagnosis of narcolepsy, as the end of things, then you probably need to find a different doctor because it’s really just getting started. So it’s really about not only screening for those things when you first see that individual, but as years pass, our radar for looking for these comorbidities is a little bit more on higher alert than maybe it has been in the past with this emergent data.
Sree Roy: That actually leads into the next thing I was wondering about, which is: How, if at all, does the existence or emergence of comorbidities impact decision making?
Dr. Chris Winter: I think this has probably been present for a long time. If there’s anything that we can do that would affect or improve the chances that an individual may not have problems down the line with any medical condition, I think we’ve always been sort of game for that. So I think that it’s just sort of heightened our awareness of the situation and made us a little bit more proactive in terms of maybe in the past, I would say to somebody, “Hey, I’ve noticed that your weight is kind of creeping up over the last two or three visits. What are you doing about it?” Maybe that’s as far as we would go in the clinic. I’m always very careful about approaching weight. It’s very easy for a doctor to sit there and say, “Lose 20 pounds.” It’s a completely different thing for a patient to actually do it.
But now that might go a little bit further and say, “Hey, look, I’m a little bit concerned about your weight going up. We know that individuals with your condition, there’s associations with other cardiovascular risk. And so weight being something that you control, unlike digging down into your chromosomes and figuring out a way to fix your narcolepsy, maybe we need to be a bit more aggressive about getting your weight under control. Or I know you say you sometimes smoke to stay awake when you’re at work. How can we be a little bit more active and aggressive about smoking cessation, knowing that it too could be playing a role?
So to me it’s about—I say this to my kids all the time—control what you can control. And so I think that right now, doctors in my position are just a little bit more aggressive maybe about controlling some of the risk factors that we have dominion over in terms of helping individuals avoid these potential medical relationships that we’ve seen with narcolepsy.
Sree Roy: We’ll be back with Dr. Winter after a short break.
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Sree Roy: Can you share any best practices for monitoring the emergence and management of narcolepsy-related comorbidities?
Dr. Chris Winter: That’s a great question, Sree. I don’t know what those best practices are. I think that we’re probably already doing that to some degree in our clinics in the sense that: Are we checking weights on patients? Are we reviewing their other medications? Suddenly they’re on Lipitor for their cholesterol being elevated. Do we talk about things like smoking, alcohol use, etc., following cholesterol, even like I said, checking blood pressure.
So, outside of that, it’s an interesting thing that with this sort of association that we’re finding with narcolepsy, we’re bringing in to some degree the whole of primary care into a clinic that’s very specialized. And I’m a neurologist, which is already sort of a subspecialty, that only deals in sleep. And I chose that because I like knowing a lot about a small amount of things.
So now, I think sleep doctors are kind of faced with this idea of, “Oh wow, we have to be a little bit more primary care in our thinking because this isn’t a little niche sort of disease that doesn’t influence other things that we’re dealing with. It may have its fingers in all kinds of things that our patients are dealing with that could have real impact in terms of their health and morbidity.”
So, I’m not entirely sure what the best practices are. I think that our community is starting to work that out right now. I’ve sat around tables with sleep doctors and said, “What do you say to patients when you diagnose them with narcolepsy?” And that can run the gamut from, “We don’t say any of these things because these are young people and they’re not going to listen,” all the way to, “We spend a lot of time talking about disease-modifying risk factors.” So I think that we’re kind of working those things out. And as we understand more about the relationship between these disease states and narcolepsy, I think that’ll become a lot clearer.
Sree Roy: What other specialists and healthcare professionals do you recommend sleep physicians develop reliable referrals with to adequately manage comorbidities in their patients with narcolepsy?
Dr. Chris Winter: That’s a great question. And hopefully, if you’re a sleep specialist, these things are already being cultivated.
I feel like in my region, we’ve got fantastic relationships with pediatricians (they’re often the ones sending us these individuals), primary care doctors, sort of the same thing. Over the last decade, there’s been sort of a real strengthening of the relationship between the sleep doctor and neurologist and maybe the psychiatrist.
Psychiatrists have really started to embrace this idea that depression, anxiety, attention issues can be highly related to sleep disorders, particularly narcolepsy. So we get a lot of psychiatrists who are referring patients to us who are not responding well to medications for these types of disorders. They wonder if perhaps the diagnosis is wrong or being exacerbated by an underlying sleep condition. So I think psychiatry has a big seat at the sleep table, even if these are psychiatrists that are not dealing specifically in sleep.
I think cardiology is another group that’s really come to sleep in the last five to 10 years. A cardiologist who is seeing a patient who’s referred for atrial fibrillation, and as part of their workup, they’re being sent to the sleep doctor to have a sleep study because they want to see how the sleep relationship is to arrhythmias at night. So I think there’s a lot of potential synergies that happen there.
And it’s really bidirectional. It’s me helping that psychiatrist with their patient manage their narcolepsy. And as their narcolepsy is better managed, the psychiatrist is having a better time managing their mood disturbance. And everybody, including the patient, wins. so I think that it’s hard to kind of come up with a specialty—allergy maybe or OBGYN?—even all those, you could probably make a pretty decent argument that… there’s pretty good relationships there between sleep medicine and those things. That’s one of the great things about sleep is, like I said, it’s got its fingers in everything.
Sree Roy: That is one of the great things about sleep. Are there any particular screening tools such as specific questionnaires that you’d recommend to other sleep physicians for this demographic?
Dr. Chris Winter: I think right now the baseline, or what is expected of the sleep specialist, is probably relatively low. But I think we should be looking at weight and weight trends for all of our patients who have not only sleep disorders, but specifically narcolepsy.
We need to be looking at the other medications they’re on.
We need to be doing some degree of psychological screening. Are these individuals who are dealing with depression, anxiety, attention problems? That really needs to be determined.
Looking at individuals in terms of their smoking.
I think cholesterol’s fair game.
I think family history of cardiovascular events are fair game.
All these little things are sort of pushing people into sort of different risk categories. Somebody who’s exceptionally healthy, doesn’t smoke, doesn’t drink, cholesterol is awesome, their weight’s perfect, no family history of X, Y, or Z, could be a very different conversation than an individual who’s already coming to you with a lot of risk factors, and oh by the way, also has narcolepsy as well too.
So I think it’s just a matter of expanding what we talk about to our patients who have narcolepsy in terms of, maybe instead of just, “Be careful when you’re driving. Should you fall asleep, you could hurt yourself or hurt others,” there may be a few additional conversation pieces that need to happen in terms of, “In addition to being very careful when you drive because falling asleep at the wheel could be problematic, you need to be very careful about salt intake, smoking, weight, cholesterol. Let’s take a look at your family history. Are you getting enough exercise? Etc.” And just adding that to the conversation.
If we’re talking about these things with patients and saying, “Being careful with your alcohol intake, being careful with your smoking, being careful with your salt, being careful with your weight,” what’s the worst thing that can happen? They’ll probably be a little bit healthier than they would’ve been had we not spoken about it. So to me, I don’t see a lot of downside to at least exploring these ideas with patients and directing them to good sources of information.
Sree Roy: Thanks so much for chatting with us on this subject today. You can find Sleep Review at sleepreviewmag.com. Thank you so much for tuning in to this episode.
To dive even deeper:
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