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Patient Survey Explores Real World Burden of Idiopathic Hypersomnia

Idiopathic hypersomnia (IH) is a debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness; prolonged, non-restorative nighttime sleep; cognitive impairment; and severe sleep inertia, which is prolonged difficulty waking with frequent reentries into sleep, confusion, and irritability.1,2

Diagnosing and, therefore, treating idiopathic hypersomnia is often challenging due to symptom overlap with other medical conditions and challenges with access to testing that can help confirm the diagnosis.3,4,5 Given this, there is limited recognition of the condition and little understanding of the burden of symptoms as well as symptom management.

Jazz’s goal is to pioneer solutions that aim to benefit people living with complex and severe conditions, including sleep disorders like idiopathic hypersomnia. As part of our commitment to increase awareness of idiopathic hypersomnia, Jazz sponsored a study authored by Logan Schneider, clinical assistant professor (affiliated) of Sleep Medicine at the Stanford Sleep Center and consultant neurologist at Stanford/VA Alzheimer’s Center, and colleagues titled, “Symptom Severity And Treatment Satisfaction In Patients With Idiopathic Hypersomnia: The Real World Idiopathic Hypersomnia Outcomes Study,” or ARISE, which was recently published in Nature and Science of Sleep.

The ARISE survey asked adults living with idiopathic hypersomnia about their condition. Seventy-five individuals, with a mean age of 34 years, participated in the study, with a majority self-reporting that their 24-hour sleep duration was 11.6 hours.6 Often times, idiopathic hypersomnia affects patients’ physical and mental health, which was supported by the fact that nearly half of participants (44%) reported having a psychiatric comorbidity, including anxiety or depression.

To assess symptom severity, the survey utilized the Epworth Sleepiness Scale (ESS) and the Idiopathic Hypersomnia Severity Scale (IHSS), both of which are validated assessment tools.6 The ESS uses a 0 to 24 score range, with scores >10 indicating pathological daytime sleepiness, the primary symptom of idiopathic hypersomnia.6,7,8 The IHSS uses a range from 0 to 50 to measure a variety of idiopathic hypersomnia symptoms, consequences, and responsiveness to treatment, with higher scores indicating greater severity of symptoms.6,9,10 The final component that the survey measured was treatment satisfaction. This was assessed using the Treatment Satisfaction Questionnaire for Medication, version II (TSQM-vII), which evaluates patient satisfaction based on effectiveness, side effects, convenience, and overall satisfaction with treatment.

Analysis of the self-reported data found that, per ESS and IHSS, patients with idiopathic hypersomnia demonstrated substantial burden of symptoms including excessive daytime sleepiness, sleep inertia, and cognitive difficulties. Results also showed that 89% of participants were taking a medication such as stimulants or anti-depressants, and other non-medical options to manage their idiopathic hypersomnia symptoms. No U.S. Food and Drug Administration-approved therapies were available at the time the survey was conducted. Finally, based on the TSQM-vII, patients had low satisfaction with the treatments available to them at the time, with treatment effectiveness being scored the lowest.

In conclusion, results from ARISE demonstrate the debilitating impact and symptom burden on people living with idiopathic hypersomnia. Based on these results, there is a need for effective treatment options that address multiple aspects of this chronic sleep disorder to help transform the lives of patients and their families.


  1. American Academy of Sleep Medicine. The International Classification of Sleep Disorders. Third Edition (ICSD-3). 2014.
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  6. Schneider LD, Stevens J, Husain AM, et al. Symptom severity and treatment satisfaction in patients with idiopathic hypersomnia: the real world idiopathic hypersomnia outcomes study (ARISE). Nat Sci Sleep. 2023;15:89-101.
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