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T80

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

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

2026 ASCP Annual Meeting

Purpose

People living with narcolepsy and idiopathic hypersomnia (IH) often report cognitive impairment as a disruptive symptom that is not managed by current treatments. This survey study examined whether cognitive impairment was associated with work productivity and health-related quality of life (HRQoL) among people diagnosed with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and IH. Methodology: The ASPIRE study was an online survey study conducted in the US among adults who self-reported a clinical diagnosis of NT1, NT2, or IH. Participants were recruited through Rare Patient Voice, Hypersomnia Foundation, and the Sleep Consortium. Cognitive impairment was assessed using the British Columbia Cognitive Complaints InventoryExpanded Version (BC-CCI-E). This tool evaluates cognitive impairment using 6 items, which assess concentration, memory, word finding, expressing thoughts, slow thinking, and problem-solving (score ranges from 0-18, with higher scores representing greater impairment). Participants were divided into two subgroups, those with mild-to-severe cognitive impairment (scored > 4) and those with no/minimal impairment (scored ≤4). The impact of cognitive impairment on daily life was assessed by 3 additional items of the BCCCI-E. The Work Productivity and Activity Impairment Questionnaire: Specific Health Problem, assessed work impairment (absenteeism and presenteeism) and activity impairment over the previous week. Participants’ HRQoL was assessed using EQ-5D-5L (score ranges from 0-1) and EQ-Visual Analogue Scale (EQ-VAS) (score ranges from 0-100), with higher scores representing better HRQoL for both scales.

Results

Three hundred and sixty-six participants (NT1: n=116; NT2, n=127; IH, n=123) were included. Participants had a mean age of approximately 40 years, more than 80% were female, and 55% were employed. About 60% of participants received treatment with nonamphetamine wake-promoting agents. Mean (SD) BC-CCI-E score was 9.2 (4.2), and 89% of participants reported mild-to-severe cognitive impairment. In the majority of participants, cognitive impairment interfered with work (95%), routine activities (94%), and relationships (81%). Mild-to-severe cognitive impairment was also associated with statistically significant increases in work impairment (58% versus 25%; p < 0.001) and activity impairment (65% versus 41%; p < 0.001) compared with no/minimal impairment. Additionally, mild-tomoderate cognitive impairment was associated with statistically significant reductions in HRQoL scores compared with no/minimal impairment (EQ-5D-5L: 0.61 versus 0.85 [p < 0.001]; EQ-VAS scores: 58 versus 74 [p < 0.001]). Observations from the survey were consistent across participants when examined by NT1, NT2, and IH disease subgroups.

Importance: In individuals living with NT1, NT2, and IH, cognitive impairment is a prevalent and burdensome symptom that negatively impacts work productivity, daily functioning, relationships, and overall HRQoL. The results of the ASPIRE survey call attention to an important unmet need to address cognitive impairment in these populations. Funding: Alkermes Inc.