Characteristics and disease burden of patients with idiopathic hypersomnia with and without long sleep time: the real-world idiopathic hypersomnia outcomes study (arise)

Abstract Introduction Idiopathic hypersomnia is a debilitating central disorder of hypersomnolence. The Real World Idiopathic Hypersomnia Outcomes Study (ARISE) assessed the symptoms and impact of idiopathic hypersomnia. Methods US-based adults with idiopathic hypersomnia with or without long sleep time (LST; ≥11 hours of sleep in a 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 were with LST and 38 were without long sleep (non-LST). Most were female (LST, 73.0%; non-LST, 89.5%) and took medication for idiopathic hypersomnia (LST, 97.3%; non-LST, 81.6%); mean age was 33.7 years (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), mean (SD) IHSS scores were 38.2 (7.1) and 32.2 (7.0), and mean (SD) 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 ability to participate in 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, and 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. Conclusion People with idiopathic hypersomnia with long sleep time report greater sleepiness; poorer quality of life, cognition, daily functioning, and work performance; a higher rate of severe depression; and less satisfaction with treatment, compared with those without long sleep time. Support (If Any) Jazz Pharmaceuticals.