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REAL-WORLD EXPERIENCE AND IMPACT OF FATIGUE IN NARCOLEPSY AND IDIOPATHIC HYPERSOMNIA FROM THE ASPIRE SURVEY STUDY

Michael Doane — Gretchen Murphy1, Jane Lazar Tucker2, Kristen McCausland2, Claire Wylds-Wright3, Lindsay Jesteadt3 1Alkermes, Inc., 2IQVIA Patient Centered Solutions, 3Sleep Consortium, Inc.; Hypersomnia Foundation

2026 ASCP Annual Meeting

Purpose

Fatigue, characterized by exhaustion and low energy, is a common and disruptive symptom in narcolepsy and idiopathic hypersomnia (IH) that patients differentiate from sleepiness and that may not be addressed by current treatments. The ASPIRE study presented here examined the impact of fatigue on work productivity and health-related quality of life (HRQoL) among individuals diagnosed with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and IH. Methodology: Adults in the US who reported a clinical diagnosis of NT1, NT2, or IH participated in an online survey. Participants were recruited through Rare Patient Voice, Hypersomnia Foundation, and Sleep Consortium. Severity of fatigue over the prior week was assessed with the PROMIS-Fatigue Short-Form 6a (PROMIS-Fatigue), for which standardized T-scores range from 33.4-76.8 and higher scores indicate more severe fatigue. Participants were divided into two subgroups: those with mild-to-severe fatigue (T-score ≥55) and those with normal fatigue (T-score < 55). Work and activity impairment were assessed with the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem, which examines absenteeism, presenteeism, and activity impairment over the prior week. HRQoL was evaluated using the EQ-5D-5L (score range is 0-1, with higher scores indicating better HRQoL) and the EQ-Visual Analogue Scale (EQ-VAS) (score range is 0-100, with higher scores indicating better HRQoL).

Results

A total of 366 participants (NT1, n=116; NT2, n=127; IH, n=123) were included in the survey. Participants had a mean age of approximately 40 years, more than half (55%) of the participants were employed, and over 80% were female. About 60% of participants received treatment with non-amphetamine wake-promoting agents. Most participants (91%) reported mild-to-severe fatigue with a mean (SD) PROMIS-Fatigue score of 65.74 (7.52). Compared with participants who reported normal fatigue, those with mild-to-severe fatigue had statistically significant increases in work impairment (59% vs 21%; p < 0.001) and activity impairment (66% vs 28%; p < 0.001). Additionally, those with mild-to-severe fatigue had statistically significant decreases in mean HRQoL scores compared with those with normal fatigue (EQ-5D-5L: 0.61 vs 0.88 [p < 0.001]; EQ-VAS: 58 vs 78 [p < 0.001]). These findings were consistent when examined by disease subgroup.

Importance: Results of the ASPIRE survey showed that most participants in this general sample with NT1, NT2, and IH reported mild-to-severe fatigue. Presence of mild-to-severe fatigue was associated with negative impacts on work productivity, daily activity, and HRQoL. These findings reveal the burden of fatigue across multiple areas of people’s lives and highlight this symptom as an unmet need in the treatment of narcolepsy and IH. Funding: Alkermes, Inc.