0396 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 Hypersomnia Outcomes Study (ARISE) assessed the symptoms and impact idiopathic hypersomnia. Methods US-based adults with or without long sleep time (LST; ≥11 hours in 24-hour period [self-reported]) completed an online survey assessing symptom severity (Epworth Sleepiness Scale [ESS]; Severity [IHSS]), daily functioning (Functional Sleep Questionnaire [FOSQ-10]), quality life (Neuro-QoL), cognition (British Columbia Cognitive Complaints Inventory [BC-CCI]), depression (Patient Health Questionnaire-9 [PHQ-9]), work/activity impairment (Work Productivity Activity Impairment Questionnaire: Specific Problem v2.0 [WPAI:SHP]), treatment satisfaction (Treatment Satisfaction for Medication vII [TSQM]). Results Of 75 participants enrolled, 37 were LST 38 (non-LST). Most female (LST, 73.0%; non-LST, 89.5%) took medication 97.3%; 81.6%); mean age was 33.7 years (LST) 34.4 In non-LST participants, respectively, (SD) ESS scores 15.4 (3.8) 13.6 (3.0), IHSS 38.2 (7.1) 32.2 (7.0), FOSQ-10 9.6 (2.3) 11.9 (2.8); Neuro-QoL 22.9 (6.1) 26.8 (5.7) ability to participate social roles/activities 22.5 (6.6) 17.4 (5.0) stigma. Severe cognitive complaints (BC-CCI score 15–18) reported by 35.1% 18.4% severe (PHQ-9 ≥20) 13.5% 5.3%. Mean WPAI:SHP 57.1 (21.9) 41.5 (21.4) presenteeism, 60.1 (24.1) 45.8 (23.8) absenteeism+presenteeism, 72.2 (17.3) 56.1 (23.2) activity impairment. TSQM 57.9 66.7 (20.3) global 49.1 (16.6) 56.2 (19.7) effectiveness. Conclusion People report greater sleepiness; poorer life, cognition, functioning, work performance; higher rate depression; less treatment, compared those time. Support (If Any) Jazz Pharmaceuticals.