REAL-WORLD EXPERIENCE AND BURDEN OF FATIGUE 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, Claire Wylds-Wright, MFA3, Lindsay Jesteadt, PhD4;
1Alkermes, Inc., Senior Director, Health Economics and Outcomes Research, Waltham, MA, USA, 2IQVIA Patient Centered Solutions, Durham, NC, USA, 3Hypersomnia Foundation, Atlanta, GA, USA, 4Sleep Consortium, West Palm Beach, FL, USA
1Alkermes, Inc., Senior Director, Health Economics and Outcomes Research, Waltham, MA, USA, 2IQVIA Patient Centered Solutions, Durham, NC, USA, 3Hypersomnia Foundation, Atlanta, GA, USA, 4Sleep Consortium, West Palm Beach, FL, USA
OBJECTIVES: People living with narcolepsy and idiopathic hypersomnia (IH) often report fatigue, characterized by exhaustion and low energy, as a common and debilitating symptom. We evaluated the association of fatigue with work productivity and health-related quality of life (HRQoL) among individuals diagnosed with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and IH.
METHODS: The ASPIRE study, an online survey, recruited adults within the US who reported clinician-diagnosed NT1, NT2, or IH. Fatigue severity over the prior week was assessed using the PROMIS-Fatigue Short-Form 6a (PROMIS-Fatigue; T-score range: 33.4-76.8). Subgroups were defined as either mild-to-severe fatigue (T-score ≥55) or normal fatigue (T-score <55). Work and activity impairment were evaluated using the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem, which measured absenteeism, presenteeism, and activity impairment over the past week. HRQoL assessments included EQ-5D-5L and EQ-Visual Analogue Scale (EQ-VAS) (scored 0-1 and 0-100, respectively; higher scores=better HRQoL).
RESULTS: Overall, 366 participants (NT1=116; NT2=127; IH=123) were included. Mean age was ~40y, >80% were female, 55% were employed, and ~60% used non-amphetamine wake-promoting agents. Average (SD) PROMIS-Fatigue score was 65.74 (7.52); 91% of participants reported mild-to-severe fatigue (T-score ≥55). Participants who reported mild-to-severe fatigue had greater impairments in work (59% vs 21%; p<0.001) and activity (66% vs 28%; p<0.001) vs the normal fatigue group. Additionally, participants with mild-to-severe fatigue had lower mean HRQoL scores vs those with normal fatigue (EQ-5D-5L: 0.61 vs 0.88 [p<0.001]; EQ-VAS: 58 vs 78 [p<0.001]). These results were consistent across subtypes (NT1, NT2, and IH).
CONCLUSIONS: Fatigue is a common symptom across NT1, NT2, and IH, with most participants experiencing mild-to-severe fatigue. Fatigue was linked with significant impairments in daily functioning, work productivity, and HRQoL. This study reveals the impact of fatigue on patients’ lives and highlights the unmet need for effective treatments that address this burdensome symptom.
METHODS: The ASPIRE study, an online survey, recruited adults within the US who reported clinician-diagnosed NT1, NT2, or IH. Fatigue severity over the prior week was assessed using the PROMIS-Fatigue Short-Form 6a (PROMIS-Fatigue; T-score range: 33.4-76.8). Subgroups were defined as either mild-to-severe fatigue (T-score ≥55) or normal fatigue (T-score <55). Work and activity impairment were evaluated using the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem, which measured absenteeism, presenteeism, and activity impairment over the past week. HRQoL assessments included EQ-5D-5L and EQ-Visual Analogue Scale (EQ-VAS) (scored 0-1 and 0-100, respectively; higher scores=better HRQoL).
RESULTS: Overall, 366 participants (NT1=116; NT2=127; IH=123) were included. Mean age was ~40y, >80% were female, 55% were employed, and ~60% used non-amphetamine wake-promoting agents. Average (SD) PROMIS-Fatigue score was 65.74 (7.52); 91% of participants reported mild-to-severe fatigue (T-score ≥55). Participants who reported mild-to-severe fatigue had greater impairments in work (59% vs 21%; p<0.001) and activity (66% vs 28%; p<0.001) vs the normal fatigue group. Additionally, participants with mild-to-severe fatigue had lower mean HRQoL scores vs those with normal fatigue (EQ-5D-5L: 0.61 vs 0.88 [p<0.001]; EQ-VAS: 58 vs 78 [p<0.001]). These results were consistent across subtypes (NT1, NT2, and IH).
CONCLUSIONS: Fatigue is a common symptom across NT1, NT2, and IH, with most participants experiencing mild-to-severe fatigue. Fatigue was linked with significant impairments in daily functioning, work productivity, and HRQoL. This study reveals the impact of fatigue on patients’ lives and highlights the unmet need for effective treatments that address this burdensome symptom.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR177
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Neurological Disorders