Idiopathic Hypersomnia Demonstrates Moderate to Severe Impact on Quality of Life, Patient-Reported Outcomes


Despite a low percentage of patients missing work time due to their condition, a higher percentage reported impairment while working, overall work impairment, and activity impairment.

Logan Schneider, MD

Logan Schneider, MD

Real-world results from the ARISE study showed that idiopathic hypersomnia (IH), an uncommon sleep disorder that causes excessive daytime sleepiness, is associated with a moderate to severe effect on quality of life (QoL), as demonstrated by responses on patient-reported outcomes.

After completing a virtual survey, the cohort of 75 participants with IH demonstrated mean Neuro-QoL scores of 24.9 (±6.2) on social functioning and 19.9 (±6.3) on stigma domains. General and clinical reference scores on Neuro-QoL were 50.4 (±9.6) and 49.7 (±9.5), respectively.

To assess real-world QoL and functional impairment in this patient population, lead investigator Logan Schneider, MD, consultant neurologist, Stanford/VA Alzheimer’s Center, and colleagues included assessments such as Functional Outcomes of Sleep Questionnaire-10 (FOSQ-10), Work Productivity and Impairment: Specific Health Problem (WPAI:SHP) questionnaire, British Columbia Cognitive Complaints Inventory (BC-CCI), and Patient Health Questionnaire (PHQ-9).

Presented at the 2022 American Academy of Neurology (AAN) Annual Meeting, April 2-7, in Seattle, Washington, the cohort was mostly female (81.3%), with the highest proportion of patients disease duration being 2 to 4 years since their diagnosis (45.3%). The mean age of the sample was 34.1 years (±10.7), with patients experiencing a mean 24-hour sleep duration of 11.6 hours (±3.4).

READ MORE: Weighing Cardiovascular Risk When Treating Narcolepsy

In addition to effects on Neuro-QoL scores, patients demonstrated mean FOSQ-10 scores of 10.7 (±2.8) compared with a previously reported normal control value of 17.8 (±3.1). When the WPAI:SHP was modified with IH as the SHP, mean scores indicated a low percent of work time missed because of patients’ condition (absenteeism, 12.3% [±23.6]), but a higher percentage of patients working while impaired (presenteeism, 47.6% [±22.7]). Additionally, mean scores showed a higher percent of overall work impairment, defined as absenteeism plus presenteeism (51.4% [±24.7]), and activity impairment due to IH (64.0% [±21.9].

Mean 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. In total, 44% of patients reported psychiatric comorbidities, most of which were anxiety disorders (34.7%).

A chronic neurologic disorder, the cause of IH is presently unknown, although a genetic predisposition is suggested by the strong family history of similar symptoms. In August 2021, the FDA made a landmark decision in approving JZP-258 (Xywav; Jazz Pharmaceuticals) as the first treatment for this indication.2 Made up of a formulation of calcium, magnesium, potassium, and sodium oxybates, JZP-258 was originally approved for the treatment of cataplexy in patients 7 years of age or older with narcolepsy, in July 2020.

Click here for more coverage of AAN 2022.

1. Schneider L, Stevens J, Husain AM, et al. Impairment in functioning and quality of life in patients with idiopathic hypersomnia: the real-world idiopathic hypersomnia outcomes study (ARISE). Presented at: 2022 AAN Annual Meeting; April 2-7; Seattle, Washington. Abstract 1218
2. Jazz Pharmaceuticals Announces U.S. FDA Approval of Xywav® (calcium, magnesium, potassium, and sodium oxybates) Oral Solution for Idiopathic Hypersomnia in Adults. News release. Jazz Pharmaceuticals. August 12, 2021. Accessed April 22, 2022.
Related Videos
Michael Levy, MD, PhD
Michael Kaplitt, MD, PhD
Michael Kaplitt, MD, PhD
video 4 - "Amyloid Cascade Hypothesis of Alzheimer’s Disease"
Video 3 - "Amyloid Precursor Protein and Amyloid Beta Species in Alzheimer’s Disease"
Svetlana Blitshteyn, MD, FAAN, director and founder of Dysautonomia Clinic
© 2024 MJH Life Sciences

All rights reserved.