0698 Real-World Experience and Impact of Cognitive Impairment in Narcolepsy and Idiopathic Hypersomnia: Survey Results from the ASPIRE Study

Abstract Introduction Cognitive impairment is a common and disruptive symptom of narcolepsy and idiopathic hypersomnia (IH) independent from sleepiness and often unaddressed by current treatments. We evaluated the association of cognitive impairment with work productivity and health-related quality of life (HRQoL) among those diagnosed with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and IH. Methods The ASPIRE study was an online survey conducted among US adults who reported being diagnosed with NT1, NT2, or IH by a clinician (recruited via Rare Patient Voice, Hypersomnia Foundation, and Sleep Consortium). Participants completed the British Columbia Cognitive Complaints Inventory-Expanded Version (BC-CCI-E), including 6 items assessing cognitive impairment (concentration, memory, word finding, expressing thoughts, slow thinking, and problem-solving; scored 0-18, higher scores=greater impairment). Subgroups were defined as mild-to-severe (scored >4) versus no/minimal impairment (scored ≤4). Three additional BC-CCI-E items assessed impact of cognitive impairment on daily life. Work and activity impairment were measured using the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem, assessing absenteeism, presenteeism, and activity impairment over the past week. HRQoL was assessed using EQ-5D-5L (scored 0-1; higher scores=better HRQoL) and EQ-Visual Analogue Scale (EQ-VAS) (scored 0-100; higher scores=better HRQoL). Results The sample included 366 participants (NT1=116; NT2=127; IH=123) with mean age ~40y; >80% were female and 55% were employed. Approximately 60% of participants were treated with non-amphetamine wake-promoting agents. The mean BC-CCI-E score was 9.2 (SD=4.2); 89% reported mild-to-severe impairment. Most participants reported that cognitive impairment interfered with work (95%), daily activities (94%), and relationships (81%). Participants with mild-to-severe cognitive impairment reported greater activity impairment (65% vs 41%; p< 0.001) and work impairment (58% vs 25%; p< 0.001) vs those with no/minimal impairment. HRQoL scores were lower among those with cognitive impairment vs those with no/minimal cognitive impairment (EQ-5D-5L: 0.61 vs 0.85 [p< 0.001]; EQ-VAS scores: 58 vs 74 [p< 0.001]). Findings were consistent across NT1, NT2, and IH subgroups. Conclusion Cognitive impairment is prevalent among individuals with NT1, NT2, and IH, and is associated with detriments in work productivity, daily functioning, relationships, and overall HRQoL. These findings underscore a critical unmet need to address cognitive symptoms across these populations. Support (if any) Alkermes, Inc.