Abstract Details

Title Impairment in Functioning and Quality of Life in Patients With Idiopathic Hypersomnia: the Real World Idiopathic Hypersomnia Outcomes Study (ARISE)

Topic Sleep

Presentation(s) S1 - Sleep: Want to Hear the Latest? (2:12 PM-2:24 PM)

Poster/Presentation
Number 007

Objective To evaluate participants’ quality of life (QoL) and functional impairment in the Real World Idiopathic Hypersomnia Outcomes Study (ARISE).

Background Idiopathic hypersomnia (IH) is a debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness; symptoms may also include prolonged nighttime sleep and severe sleep inertia. Limited information is available on the impact of IH on patients’ QoL and daily functioning.

Design/Methods

US-based adults (21–65 years of age) with IH completed a virtual survey comprising multiple patient-reported outcome measures. QoL and functional impairment were assessed using the Neuro-QoL (social roles and stigma domains), Functional Outcomes of Sleep Questionnaire-10 (FOSQ-10), Work Productivity and Impairment: Specific Health Problem (WPAI:SHP; with IH as the SHP) questionnaire, British Columbia Cognitive Complaints Inventory (BC-CCI), and Patient Health Questionnaire (PHQ-9). Participants’ symptom severity and treatment satisfaction are reported separately.

Results Seventy-five participants were enrolled (mean±SD age: 34.1±10.7 years; 81.3% female; mean±SD 24-hour sleep duration: 11.6±3.4 hours; years since diagnosis: <2 [16.0%], 2-4 [45.3%], 5-9 [24.0%], ≥10 [14.7%]). Mean±SD Neuro-QoL scores were 24.9±6.2 (social functioning; general reference score: 50.4±9.6) and 19.9±6.3 (stigma; clinical reference score: 49.7±9.5). Mean±SD FOSQ-10 score was 10.7±2.8 (previously reported normal control value: 17.8±3.1). Mean±SD WPAI:SHP scores indicated low percent work time missed due to IH (absenteeism; 12.3±23.6%), but higher percent impairment while working (presenteeism; 47.6±22.7%), overall work impairment (absenteeism+presenteeism; 51.4±24.7%), and activity impairment due to IH (64.0±21.9%). Mean±SD BC-CCI and PHQ-9 scores were 10.8±4.8 and 12.3±5.4, respectively, with 62.7% and 66.7% of participants scoring in the moderate to severe range on the BC-CCI and PHQ-9, respectively. Psychiatric comorbidity was reported by 44.0% (most commonly anxiety disorders [34.7%]).

Conclusions The ARISE study suggests that many patients with IH experience moderate to severe QoL impairment across functional, social, and vocational domains.

Authors/Disclosures
Logan D. Schneider, MD (Stanford/VA Alzheimer's Center) PRESENTER	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 intellectual property interests from a discovery or technology relating to health care.
	No disclosure on file
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
Wayne Macfadden, MD, PT	Dr. Macfadden has received personal compensation for serving as an employee of Jazz pharma. Dr. Macfadden has stock in Jazz pharma.
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.
Phyllis C. Zee, MD, PhD (Northwestern Univ Medical School)	Dr. Zee has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Eisai. Dr. Zee has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Takeda. Dr. Zee has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Jazz. Dr. Zee has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Apnimed. Dr. Zee has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for CVS Caremark. Dr. Zee has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Harmony. Dr. Zee has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Harmony Biosciences. Dr. Zee has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals Inc.. Dr. Zee has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Apnimed. Dr. Zee has received personal compensation in the range of $0-$499 for serving as an officer or member of the Board of Directors for World Sleep Society. An immediate family member of Dr. Zee has stock in Teva. The institution of Dr. Zee has received research support from National Institutes of Health. The institution of Dr. Zee has received research support from Sleep Number. Dr. Zee has received intellectual property interests from a discovery or technology relating to health care. Dr. Zee has received intellectual property interests from a discovery or technology relating to health care. Dr. Zee has received publishing royalties from a publication relating to health care.

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