Our Science
World Sleep Day 2026: Sleep Well, Live Better
By Michael Doane, Executive Director, Health Economics and Outcomes Research
The theme for World Sleep Day 2026 – “Sleep Well, Live Better” – includes a powerful reminder of the outsized impact that sleep can have on daily functioning. Findings from recent qualitative interviews we've conducted with patients with narcolepsy and idiopathic hypersomnia (IH) suggest that this concept resonates deeply for those living with a chronic sleep disorder.
As Alkermes’ head of Health Economics and Outcomes Research (HEOR), my team is responsible for generating evidence that helps bridge clinical science with real world decision making by assessing not only whether a treatment works, but how it affects patients’ lives and the broader healthcare system. Whether through focus groups, qualitative interviews or surveys, patient input informs how we define unmet need, think about the design of our studies, select endpoints, and measure meaningful change.
As part of these efforts, we conducted a series of qualitative interviews with patients with narcolepsy type 1 (NT1; n=12), narcolepsy type 2 (NT2; n=10) and IH (n=10), which highlighted the long journey to diagnosis, key symptoms and broad burden of these diseases:
- Approximately half of participants reported that it took 10 years or longer to receive an accurate diagnosis of narcolepsy or IH after the onset of symptoms.
- The most frequently reported symptoms across patient groups were cognitive impairment (n=31, 97%), excessive daytime sleepiness (n=30, 94%), and fatigue (n=27, 84%). For patients with NT1, cataplexy was also among the top symptoms reported (n=12, 100%).
- Nearly all participants reported negative impacts on work or school (n=31, 97%), mental health (n=31, 97%), and instrumental activities of daily living (n=30, 90%) such as home maintenance, cooking/preparing meals, and driving.
- Most participants also described impacts on their relationships with family and friends (n=26, 82%), activities of daily living (n=24, 75%) such as eating, bathing, dressing/grooming, and toileting, and physical functioning (n=23, 72%).
We presented some of these findings at Hypersomnia Foundation’s 2025 Beyond Sleepy conference, where we had the honor of hearing from two members of the patient community who live with IH: Michelle Chadwick and Jessica Reinsmoen. Michelle and Jessica described their diagnosis journey, key symptoms and the overall impact that this condition has had on their lives. In their own words:
- “In addition to the constant sleepiness, brain fog is one of the toughest symptoms for me. My ability to concentrate fades quickly, especially after just a few hours of being awake. Sometimes I’ll walk into a room and completely forget what I was there for. Or I’ll be in the middle of a conversation and suddenly lose my train of thought, which can be really embarrassing, especially in the work environment when I’m speaking to partners or stakeholders.” - Jessica Reinsmoen
- “The biggest challenge for me after getting diagnosed in high school was not being able to wake up in the morning, and having that slow start. I continued to be late for school, and as a result of that my grades suffered. Once in the workforce, I struggled to wake up in the morning and get going. I would be embarrassed about not getting into work on time or at all. You’re expected to call in sick, but if you’re asleep you can’t do that. It’s hard for people to understand that.” - Michelle Chadwick
World Sleep Day is an opportunity to reflect not only on the importance of sleep, but also on how collaboration drives progress. We believe that listening to patients and incorporating their lived experiences into our work is essential to advancing medicines that can truly make a difference.
References:
Doane, M. J., et al (2025). Diagnosis journey, symptoms, and burden of idiopathic hypersomnia: Patient perspectives from qualitative interviews [Poster presentation]. SLEEP 2025: Annual Meeting of the Associated Professional Sleep Societies. Alkermes Medical Affairs.
Doane, M. J., et al. (2024). The burden of living with narcolepsy: Patient perspectives from indepth qualitative interviews [Poster presentation]. SLEEP 2024: Annual Meeting of the Associated Professional Sleep Societies. Alkermes Medical Affairs.
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Last updated: March 2026