Characteristics and Disease Burden of Patients With Idiopathic Hypersomnia With and Without Long Sleep Time: The Real-World Idiopathic Hypersomnia Outcomes Study (ARISE)
Logan Schneider1, Joanne Stevens2, Aatif Husain3, Diane Ito4, Douglas Fuller2, Wayne Macfadden2
1Stanford/VA Alzheimer's Center, 2Jazz Pharmaceuticals, 3Duke University Medical Center, 4Stratevi
Objective:
To assess the symptoms and impact of idiopathic hypersomnia in a real-world study.
Background:
Idiopathic hypersomnia is a central disorder of hypersomnolence.
Design/Methods:
US-based adults with idiopathic hypersomnia with or without long sleep time (LST; ≥11 hours of sleep per 24-hour period [self-reported]) completed an online survey assessing symptom severity (Epworth Sleepiness Scale [ESS]; Idiopathic Hypersomnia Severity Scale [IHSS]), daily functioning (Functional Outcomes of Sleep Questionnaire [FOSQ-10]), quality of life (Neuro-QoL), cognition (British Columbia Cognitive Complaints Inventory [BC-CCI]), depression (Patient Health Questionnaire-9 [PHQ-9]), work/activity impairment (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem v2.0 [WPAI:SHP]), and treatment satisfaction (Treatment Satisfaction Questionnaire for Medication vII [TSQM]).
Results:
Of 75 participants enrolled, 37 had LST and 38 did not (non-LST). Most were female (LST, 73.0%; non-LST, 89.5%) and were taking medication for idiopathic hypersomnia (LST, 97.3%; non-LST, 81.6%); mean age was 33.7 (LST) and 34.4 years (non-LST). In LST and non-LST participants, respectively, mean (SD) ESS scores were 15.4 (3.8) and 13.6 (3.0), IHSS scores were 38.2 (7.1) and 32.2 (7.0), and FOSQ-10 scores were 9.6 (2.3) and 11.9 (2.8); mean (SD) Neuro-QoL scores were 22.9 (6.1) and 26.8 (5.7) for social roles/activities and 22.5 (6.6) and 17.4 (5.0) for stigma. Severe cognitive complaints (BC-CCI score 15–18) were reported by 35.1% and 18.4% of LST and non-LST participants, respectively. Severe depression (PHQ-9 score ≥20) was reported by 13.5% and 5.3%. Mean (SD) WPAI:SHP scores in LST and non-LST participants were 57.1 (21.9) and 41.5 (21.4) for presenteeism, 60.1 (24.1) and 45.8 (23.8) for absenteeism+presenteeism, and 72.2 (17.3) and 56.1 (23.2) for activity impairment. Mean (SD) TSQM scores in LST and non-LST participants were 57.9 (21.4) and 66.7 (20.3) for global satisfaction and 49.1 (16.6) and 56.2 (19.7) for effectiveness.
Conclusions:
Individuals with idiopathic hypersomnia are adversely impacted by their condition, regardless of LST.