ASPIRE Survey Study Results: New Insights on Patients With Narcolepsy & Idiopathic Hypersomnia

CONFERENCE REPORTER

At the American Society of Clinical Psychopharmacology (ASCP) Annual Meeting in Miami, FL, investigators presented results from the ASPIRE survey study via 2 posters.^1,2 This research demonstrates the impact of cognitive impairment and fatigue on health-related quality of life and work productivity in patients with narcolepsy type 1 (NT1) , narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH), ultimately highlighting unmet needs in the treatment of these disorders of hypersomnolence.

Michael Doane, PhD, the head of health economics and outcomes research at Alkermes, shared his insights with Psychiatric Times.

Fatigue is characterized by exhaustion and low energy, which can affect a patient’s education, employment, relationships, and overall quality of life.³ Patients may experience symptoms of fatigue even while taking medications for narcolepsy or IH. Investigators found that fatigue was common across participants with NT1, NT2, and IH, with over 90% of all participants reporting mild-to-severe fatigue. Fatigue was also associated with significant burden across outcomes, with the greatest burden among participants with more severe fatigue.

As to cognitive functioning, impairment interfered with work (95%), routine activities (94%), and relationships (81%). Mild-to-severe impairment was also associated with statistically significant increases in work impairment (58% vs 25%; P<.001) and activity impairment (65% vs 41%; P<.001) compared with no/minimal impairment.

Overall, these findings established relevant patient-reported outcome measures in research to support standardized interpretation and characterization of disease burden and treatment benefit.

Dr Doane is the head of health economics and outcomes research at Alkermes.

References

1. Doane M. Real-world experience and impact of fatigue in narcolepsy and idiopathic hypersomnia from the ASPIRE survey study. Poster presented at: 2026 ASCP Annual Meeting; May 26-29; Miami Beach, FL. Accessed May 29, 2026.

2. Doane M. Real-world experience and impact of cognitive impairment in narcolepsy and idiopathic hypersomnia from the ASPIRE survey study. Poster presented at: 2026 ASCP Annual Meeting; May 26-29; Miami Beach, FL. Accessed May 29, 2026.

3. Schokman A, Cheung J, Milton A, et al. Making sense of narcolepsy: a qualitative exploration of how persons with narcolepsy perceive symptoms and their illness experience. Sleep Med. 2024;116:62-70.