Assessing Symptom Severity and Quality of Life in Narcolepsy and Idiopathic Hypersomnia

Symptom measurement in central disorders of hypersomnolence has long relied on objective sleep testing that may not always align with what patients report experiencing on the day to day. Newly presented data are pushing the field to reconsider how narcolepsy and idiopathic hypersomnia (IH) are diagnosed and monitored, with an emphasis on capturing long sleep duration, cognitive impact, and quality-of-life measures alongside traditional polysomnography (PSG) and multiple sleep latency testing (MSLT).¹

These latest updates were featured in the session titled "Reimagining Sleep and Wake Measures and Protocols: From Patient Narratives to Objective Biomarkers in Hypersomnolence Disorders," presented at the 2026 SLEEP Annual Meeting, held June 14-17 in Baltimore, Maryland. The session was chaired by Kiran Maski, MD, MPH, a sleep medicine specialist at Boston Children's Hospital, and included Lucie Barateau, MD, PhD, an associate professor of the Sleep Unit at Montpellier University Hospital; David Plante, MD, PhD, an associate professor of Sleep Medicine at the University of Wisconsin-Madison; and Julie Flygare, JD, the president and CEO at Project Sleep.

To further discuss the session's key takeaways, NeurologyLive^® spoke with Maski and Flygare who each presented perspectives on their presentation. Maski discussed new data suggesting IH may represent 2 distinct phenotypes and proposed modifications to PSG-MSLT protocols to better capture long sleep duration. Flygare discussed newer patient-reported outcome tools, including the Functional Impacts of Narcolepsy Instrument (FINI) and the Patient-Reported Outcome Measures in Central Disorders of Hypersomnolence (PROM-CDH), along with the need for measures that better reflect stigma, isolation, and functional wellbeing.

NeurologyLive: What did you present at the SLEEP 2026 meeting regarding symptom assessment in narcolepsy and IH?

Kiran Maski, MD, MPH: We talked about hypersomnia disorders and really connecting the subjective experience that patients go through in terms of their symptomatology and what they consider severity, and how we can measure that in both clinical trials as well as implement that for diagnostic purposes.

Jule Flygare, JD: I gave more of a patient advocacy perspective on how we assess symptoms of narcolepsy and IH. I talked about some of the different screening tools and the more subjective, self‑reported measures we use, as well as some of the newer objective tools that are being developed.

Overall, it was about: how do we assess people’s symptoms so we can understand how they’re doing in their treatment journey, and whether they’re experiencing improvements in their symptoms. Then making sure the measures we’re using actually reflect those improvements patients feel.

What were some of the key takeaways from your session for neurologists?

Maski: I think for the condition of IH, we presented some new data really strengthening expert consensus that IH is really like 2 different conditions. One is very similar to narcolepsy, where patients are very sleepy. They are often diagnosed by the mean sleep latency cutoff of 8 minutes; they might even have one sleep-onset REM period. They often have sleep paralysis and other REM-like features, and they often respond to wake-promoting medications.

Then there’s the longer-sleep type, where they usually sleep more than 10 hours. What we were highlighting, based on patient experience through patient registries, is that they do have milder daytime sleepiness and more fatigue. Their main problem is really long sleep duration and sleep inertia, and that’s not something that is captured on standard diagnostic tests such as the MSLT. So, often the feeling is that we’re missing that diagnosis.

We presented data showing that the mean sleep latency of 8 minutes or less is not associated with the more severe IH symptoms based on the Idiopathic Hypersomnia Severity Scale. But if we modify the protocol to capture long sleep duration to meet the criteria of 11 hours or more, we are able to show that there’s a strong association with the severity of IH, as one would hope when you’re doing a diagnostic test.

Based on our data, which we’re still collecting; it’s an ongoing research study, we do think that there could be modifications to the PSG–MSLT so that a longer sleep duration is captured, and then an abbreviated MSLT with just 4 naps could also rule out narcolepsy type 2. So, it’s a very efficient protocol in the sense that you’re able to capture both phenotypes of IH, and you’re able to rule out narcolepsy. For many people, removing REM-suppressing medications is very difficult, and at least this allows for a diagnosis that’s based on long sleep duration and/or quick sleep onset on the MSLT.

Flygare: There are some important new tools because they’re starting to look more at the cognitive impacts of narcolepsy and quality‑of‑life impacts.

There’s the new FINI scale, which helps capture more of the cognitive side, whether people feel like they can’t remember things well, or they’re not able to concentrate, things like that. These aspects have often been more of the “invisible” side of living with narcolepsy. But with the FINI, we can better track whether people are experiencing cognitive impacts and whether those are improving with treatment, which I think is really cool.

At the same time, there’s another instrument developed in the last couple of years called the PROM‑CDH. This one includes aspects of daily functioning—how people feel in their daily lives, whether they’re able to do their activities, drive, and keep up with responsibilities—along with some of the psychosocial aspects of living with narcolepsy. It’s a quality‑of‑life measure that more broadly looks at functioning and social experience.

In my presentation, I shared that I’m excited about these measures, but I also think there is more we can do to better articulate patients’ functional experiences. A lot of the questions are written in a deficit format—“Do you have trouble remembering things?” “Do you have trouble concentrating?”—and I suggested that having or not having deficits is not the same thing as truly fully functioning. If more questions were written in a neutral framework, we might better capture when people are doing well.

For the social measures in the PROM‑CDH, I felt there were missing pieces around isolation and stigma, which are important. If you ask someone, for example, “Do you feel comfortable working in a job?”, the answer could be influenced by their narcolepsy symptoms, but it could also be driven by stigma. There’s some research suggesting stigma is an independent driver of functioning in narcolepsy. We need to parse out what’s stigma versus what’s symptom‑related, both are very real in people’s lives.

From a patient perspective, if we’re going to start asking questions about the social side, we need to remember stigma as a driver and address how alone people often feel. We should be asking about isolation in these questionnaires, because we already have great social support opportunities, nonprofit organizations, and support groups. If we identify isolation in these measures, we can connect people with those resources.

What unanswered questions remain about in patients with narcolepsy and IH?

Maski: We probably need to include a healthy population, because it is quite hard to separate clinical populations based on accuracy curves. So that’s something that we hope to do. Also, the reliability of testing is part of good validation. It’s not clear here that it is 100% necessary, because at least some of the newer data do suggest that objective measures in IH do change with time, and that’s just the natural course of the condition. It’s very possible you could redo the testing years later and get different responses. It’s not a failure of the testing; it’s just the changing nature of the condition.

I think that making sure that the diagnosis is really accurate is very helpful. The condition of IH implies, we really don't know what causes this. I think if we can get more accurate diagnosis and more homogeneous patient populations, those types of questions about etiology have a higher chance of being answered.

Flygare: I really wish we had more social scientists in the narcolepsy space. We have a lot of great neurologists, and that’s awesome, but the social science aspect is underdeveloped.

For example, could we design a clinical trial that evaluates a social support intervention, connecting someone with a peer mentor and having them go through six sessions together. Then, at the end, seeing whether they feel more equipped and more able to manage their condition? I think that’s a really underrated aspect of living with narcolepsy.

We already see this model in other areas, especially in mental health, where they’ve developed peer‑mentor‑type interventions. I’m not suggesting this as a replacement for pharmacologic treatment or therapy, but as a complement. I think we’d see improved outcomes when we address both the social side and the medical side.

So, my main takeaway for people is: please don’t fear the social side—it’s so important. We could develop meaningful interventions to help people feel less alone and more empowered to pursue treatment and the best life they can.

Transcript edited for clarity. Click here for more coverage of SLEEP 2026.

REFERENCES
1. Maski K, Barateau L, Plante D, Flygare J. Reimagining Sleep and Wake Measures and Protocols: From Patient Narratives to Objective Biomarkers in Hypersomnolence Disorders. Presented at: 2026 SLEEP Annual Meeting; June 14-17; Baltimore, Maryland.