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Abstract Details

Characteristics and Disease Burden of Patients With Idiopathic Hypersomnia With and Without Long Sleep Time: The Real-World Idiopathic Hypersomnia Outcomes Study (ARISE)
Sleep
P2 - Poster Session 2 (11:45 AM-12:45 PM)
11-006
To assess the symptoms and impact of idiopathic hypersomnia in a real-world study.

Idiopathic hypersomnia is a central disorder of hypersomnolence.

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]). 

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.

Individuals with idiopathic hypersomnia are adversely impacted by their condition, regardless of LST. 
Authors/Disclosures
Wayne Macfadden, MD, PT
PRESENTER
Dr. Macfadden has received personal compensation for serving as an employee of Jazz pharma. Dr. Macfadden has stock in Jazz pharma.
Logan D. Schneider, MD (Stanford/VA Alzheimer's Center) Dr. Schneider has received personal compensation for serving as an employee of Alphabet, Inc. Dr. Schneider has received personal compensation in the range of $100,000-$499,999 for serving on a Speakers Bureau for Jazz Pharmaceuticals. Dr. Schneider has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Avadel Pharmaceuticals. Dr. Schneider has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Axsome. Dr. Schneider has received intellectual property interests from a discovery or technology relating to health care.
Joanne Stevens, BA (Jazz Pharmaceuticals) Ms. Stevens has stock in Jazz Pharmaceuticals.
Aatif M. Husain, MD (Duke University Medical Center) Dr. Husain has received personal compensation in the range of $0-$499 for serving as a Consultant for Jazz Pharmaceuticals. Dr. Husain has received personal compensation in the range of $500-$4,999 for serving as a Consultant for The Methodist Hospital. Dr. Husain has received personal compensation in the range of $500-$4,999 for serving as a Consultant for WebMD. Dr. Husain has received personal compensation in the range of $500-$4,999 for serving as a Consultant for MedIQ. Dr. Husain has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Eisai Pharmaceuticals. Dr. Husain has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB Pharmaceuticals. Dr. Husain has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck . Dr. Husain has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for UniQure. Dr. Husain has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Marinus Pharmaceutical. The institution of Dr. Husain has received research support from Marinus Pharmaecuticals. The institution of Dr. Husain has received research support from PranaQ. Dr. Husain has received publishing royalties from a publication relating to health care. Dr. Husain has received publishing royalties from a publication relating to health care. Dr. Husain has received publishing royalties from a publication relating to health care. Dr. Husain has received personal compensation in the range of $500-$4,999 for serving as a Honorarium with American Clinical Neurophysiology Society. Dr. Husain has a non-compensated relationship as a Vice Chair of CNP MOC committee with American Board of Psychiatry and Neurology that is relevant to AAN interests or activities.
No disclosure on file
Douglas S. Fuller (Jazz Pharmaceuticals) Mr. Fuller has received personal compensation for serving as an employee of Jazz Pharmaceuticals. Mr. Fuller has stock in Jazz Pharmaceuticals.