ArticleNature and science of sleep2023
Symptom Severity and Treatment Satisfaction in Patients with Idiopathic Hypersomnia: The Real World Idiopathic Hypersomnia Outcomes Study (ARISE).
Article in Nature and science of sleep, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
19 citing papers in PubMed, 22 citations in OpenAlex.
- Effectiveness and Safety of Low-Sodium Oxybate in Participants with Idiopathic Hypersomnia: Primary Results from the DUET Study.CNS drugs · 2026Trial
- A minimal clinically important difference for the sleep inertia visual analog scale in idiopathic hypersomnia.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025Trial
- Narcolepsy and Idiopathic Hypersomnia Real-World Treatment Patterns and Changes in Alerting Agent Use After Low-Sodium Oxybate Initiation: A Retrospective Claims Analysis.Neurology and therapy · 2026Article
- The Clinical, Humanistic, and Economic Burden of Idiopathic Hypersomnia in the United States: Analysis of the National Health and Wellness Survey.Nature and science of sleep · 2026Article
- Idiopathic hypersomnia is a 24-hour disorder.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025Review
- AMCP Market Insights: Payer best practices for timely diagnosis and optimal management of idiopathic hypersomnia.Journal of managed care & specialty pharmacy · 2025Article
- A Patient-centric Clinical Trial Design to Comprehensively Evaluate Low-Sodium Oxybate in People with Idiopathic Hypersomnia or Narcolepsy.Neurology and therapy · 2025Article
- Current knowledge on the pathophysiology of idiopathic hypersomnia and potential mechanisms of action for low-sodium oxybate treatment.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2025Review
- The Overlapping Burdens of Fatigue and Daytime Sleepiness: Gender-Specific Impacts on Life Quality in Patients with Sleep Disorders.Diseases (Basel, Switzerland) · 2025Article
- The Clinical and Economic Burden of Idiopathic Hypersomnia: Results from the Real-World Idiopathic Hypersomnia Total Health Model (RHYTHM) Study.Nature and science of sleep · 2025Article
- The Clinical and Economic Burden of Idiopathic Hypersomnia and Narcolepsy: A United States Claims-Based Analysis.Nature and science of sleep · 2025Article
- The experience and impact of living with idiopathic hypersomnia: A qualitative study of patient perspectives shared in online media.PloS one · 2025Article
- A scoping review of the evidence on pharmacological and nonpharmacological interventions for idiopathic hypersomnia.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2024Article
- Brain fog in central disorders of hypersomnolence: a review.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2024Review
- Successful Challenge With Brexpiprazole for Idiopathic Hypersomnia in a Patient With Bipolar Disorder: A Case Report.Cureus · 2024Article
- Diagnostic challenges and burden of idiopathic hypersomnia: a systematic literature review.Sleep advances : a journal of the Sleep Research Society · 2024Article
- Psychiatric comorbidity in Danish patients with narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia: a case-control study.Sleep advances : a journal of the Sleep Research Society · 2024Article
- Long-Term Treatment of Narcolepsy and Idiopathic Hypersomnia with Low-Sodium Oxybate.Nature and science of sleep · 2023Review
- Impairment in Functioning and Quality of Life in Patients with Idiopathic Hypersomnia: The Real World Idiopathic Hypersomnia Outcomes Study (ARISE).Nature and science of sleep · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Objective: Idiopathic hypersomnia is a debilitating sleep disorder characterized by excessive daytime sleepiness, sleep inertia, and prolonged sleep duration. The patient burden of idiopathic hypersomnia is poorly understood. The Real World Idiopathic Hypersomnia Outcomes Study (ARISE) evaluated symptoms and treatment effectiveness/satisfaction in participants with idiopathic hypersomnia. Methods: ARISE was a United States-based virtual cross-sectional survey. Participants were adults 21-65 years of age with idiopathic hypersomnia recruited from social media, the Hypersomnia Foundation website, and a patient panel. Self-assessments included the Epworth Sleepiness Scale (ESS), Idiopathic Hypersomnia Severity Scale (IHSS), Treatment Satisfaction Questionnaire for Medication, version II (TSQM-vII), and additional treatment questions. Data were analyzed for all participants and for subgroups with/without long sleep time (LST; ≥11 hours in 24 hours). Results: Of 75 participants enrolled, most were female (81.3%). The mean (SD) age was 34.1 (10.7) years and 49% had LST. Most participants took off-label prescription medications (89.3%) and/or used other measures (93.3%) to manage their symptoms. The mean (SD) ESS score was 14.5 (3.5) and the mean IHSS score was 35.2 (7.6). Treatment satisfaction was low (mean [SD] TSQM-vII score: overall, 61.9 [21.2]; with LST, 57.9 [21.4]; without LST, 66.7 [20.3]), primarily driven by dissatisfaction with treatment effectiveness. The most common classes of prescription medications used were stimulants (61.3%), wake-promoting agents (28.0%), and antidepressants (18.7%); non-prescription measures used to manage symptoms included caffeine (73.3%), planned naps (34.7%), and individual accommodations (32.0%). Conclusion: Overall, participants with idiopathic hypersomnia, with or without LST, had substantial symptom burden despite most of the study population taking off-label medications and using nonprescription measures to manage symptoms.
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