REAL-WORLD EXPERIENCE AND BURDEN OF COGNITIVE IMPAIRMENT IN NARCOLEPSY AND IDIOPATHIC HYPERSOMNIA: SURVEY RESULTS FROM THE ASPIRE STUDY
Author(s)
Michael J. Doane, MA, PhD1, Jane Lazar Tucker, PhD2, Kristen McCausland, MPH, PhD2, Lindsay Jesteadt, PhD3, Claire Wylds-Wright, MFA4;
1Alkermes, Inc., Senior Director, Health Economics and Outcomes Research, Waltham, MA, USA, 2IQVIA Patient Centered Solutions, Durham, NC, USA, 3Sleep Consortium Inc., West Palm Beach, FL, USA, 4Hypersomnia Foundation, Atlanta, GA, USA
1Alkermes, Inc., Senior Director, Health Economics and Outcomes Research, Waltham, MA, USA, 2IQVIA Patient Centered Solutions, Durham, NC, USA, 3Sleep Consortium Inc., West Palm Beach, FL, USA, 4Hypersomnia Foundation, Atlanta, GA, USA
OBJECTIVES: Patients with narcolepsy and idiopathic hypersomnia (IH) commonly report cognitive impairment, which current treatments may not address. This study evaluated the association of cognitive impairment with work productivity and health-related quality of life (HRQoL) among individuals with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and IH.
METHODS: The ASPIRE study was an online survey among US adults who reported clinician-diagnosed NT1, NT2, or IH. Cognitive impairment was evaluated with the British Columbia Cognitive Complaints Inventory-Expanded Version (BC-CCI-E). Six items assessed concentration, memory, word finding, expressing thoughts, slow thinking, and problem-solving (scored 0-18; higher scores=greater impairment). Participants were categorized as having mild-to-severe (score >4) or no/minimal (score ≤4) impairment. Three additional BC-CCI-E items evaluated the impact of cognitive impairment on daily life. The Work Productivity and Activity Impairment Questionnaire: Specific Health Problem evaluated absenteeism, presenteeism, and activity impairment over the past week. The EQ-5D-5L and EQ-Visual Analogue Scale (EQ-VAS) assessed HRQoL (scored 0-1 and 0-100, respectively; higher scores=better HRQoL for both).
RESULTS: Overall, 366 participants (NT1=116; NT2=127; IH=123) with mean age ~40y were included; >80% were female, 55% were employed, and ~60% were treated with non-amphetamine wake-promoting agents. Mean (SD) BC-CCI-E score was 9.2 (4.2) and 89% reported mild-to-severe cognitive impairment. Cognitive impairment interfered with work (95%), daily activities (94%), and relationships (81%) for most participants. Participants with mild-to-severe cognitive impairment had significantly greater work impairment (58% vs 25%; p<0.001) and activity impairment (65% vs 41%; p<0.001), and lower HRQoL scores (EQ-5D-5L: 0.61 vs 0.85 [p<0.001]; EQ-VAS: 58 vs 74 [p<0.001]), than participants with no/minimal impairment. Results were consistent across all disease subgroups.
CONCLUSIONS: Cognitive impairment is common among patients with NT1, NT2, and IH, and associated with negative effects on work productivity, daily functioning, relationships, and overall HRQoL. Results highlight an unmet need for treatments that address cognitive impairment across these populations.
METHODS: The ASPIRE study was an online survey among US adults who reported clinician-diagnosed NT1, NT2, or IH. Cognitive impairment was evaluated with the British Columbia Cognitive Complaints Inventory-Expanded Version (BC-CCI-E). Six items assessed concentration, memory, word finding, expressing thoughts, slow thinking, and problem-solving (scored 0-18; higher scores=greater impairment). Participants were categorized as having mild-to-severe (score >4) or no/minimal (score ≤4) impairment. Three additional BC-CCI-E items evaluated the impact of cognitive impairment on daily life. The Work Productivity and Activity Impairment Questionnaire: Specific Health Problem evaluated absenteeism, presenteeism, and activity impairment over the past week. The EQ-5D-5L and EQ-Visual Analogue Scale (EQ-VAS) assessed HRQoL (scored 0-1 and 0-100, respectively; higher scores=better HRQoL for both).
RESULTS: Overall, 366 participants (NT1=116; NT2=127; IH=123) with mean age ~40y were included; >80% were female, 55% were employed, and ~60% were treated with non-amphetamine wake-promoting agents. Mean (SD) BC-CCI-E score was 9.2 (4.2) and 89% reported mild-to-severe cognitive impairment. Cognitive impairment interfered with work (95%), daily activities (94%), and relationships (81%) for most participants. Participants with mild-to-severe cognitive impairment had significantly greater work impairment (58% vs 25%; p<0.001) and activity impairment (65% vs 41%; p<0.001), and lower HRQoL scores (EQ-5D-5L: 0.61 vs 0.85 [p<0.001]; EQ-VAS: 58 vs 74 [p<0.001]), than participants with no/minimal impairment. Results were consistent across all disease subgroups.
CONCLUSIONS: Cognitive impairment is common among patients with NT1, NT2, and IH, and associated with negative effects on work productivity, daily functioning, relationships, and overall HRQoL. Results highlight an unmet need for treatments that address cognitive impairment across these populations.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR12
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Neurological Disorders