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Poor Quality of Life, Impaired Functioning for Those With Idiopathic Hypersomnia


Poor quality of life and impaired functioning across many symptom domains were shown in participants in the Real World Idiopathic Hypersomnia Outcomes Study (ARISE).

Real World Idiopathic Hypersomnia Outcomes Study (ARISE) participants with idiopathic hypersomnia showed poor quality of life and impaired functioning across multiple symptom domains, according to a new study published in Nature and Science of Sleep.

Idiopathic hypersomnia is an incapacitating neurologic sleep disorder categorized by excessive daytime sleepiness, sleep inertia, and prolonged sleep. The impact of idiopathic hypersomnia on patients’ quality of life and daily functioning has not been fully clarified, the investigators noted. ARISE evaluated the daily functioning, relationships, cognition, emotional well-being, productivity, and employment of participants with idiopathic hypersomnia.

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ARISE was a United States–based virtual cross-sectional survey consisting of multiple patient-reported outcome measures:

  • Functional Outcomes of Sleep Questionnaire, short version (FOSQ-10)
  • Quality of Life in Neurological Disorders (Neuro-QoL) Social Roles and Stigma domains
  • British Columbia Cognitive Complaints Inventory (BC-CCI)
  • Patient Health Questionnaire (PHQ-9)
  • Work Productivity and Activity Impairment Questionnaire: Specific Health Problem (WPAI:SHP)

The participants were adults aged 21 to 65 years with idiopathic hypersomnia. Data were evaluated for all participants and for subgroups both with and without long sleep time (LST; self-reported sleep ≥ 11 hours in 24 hours). Of the 75 participants, most enrolled were female (81.3%) and the mean (SD) age was 34.1 (10.7) years.

Participants’ mean scores on the FOSQ-10 (10.7 [2.8]) and the Neuro-QoL Social Roles (43.4 [4.2]) and Stigma (57.3 [5.9]) domains mirrored impairments in daily functioning and quality of life. In addition, participants noted moderate to severe cognitive complaints (62.7%) on the BC-CCI and moderate to severe symptoms of depression (66.7%) on the PHQ-9. Mean scores on the WPAI:SHP displayed considerable impairments in absenteeism (12.3% [23.6%]), presenteeism (47.6% [22.7%]), overall work productivity (51.4% [24.7%]), and overall regular daily activity (64.0% [21.9%]. These sizeable impairments were found in participants both with and without LST.

These data align with several previous studies, which show that over half of patients with idiopathic hypersomnia encounter cognitive dysfunction, like difficulties with memory and attention.

“The characteristics of this study population were broadly consistent with other larger studies of people with idiopathic hypersomnia (eg, over half were female, and typically ≈ 30-40 years of age),” emphasized the study authors.

Impairments in daily functioning such as cognition, mood, and work productivity during daily functioning were seen in participants regardless of LST phenotype.

“Although ARISE was not designed to compare differences between participants with and without LST, several studies have reported greater symptom prevalence in participants with LST, such as brain fog, difficulty waking up, fatigue, and sleep inertia, which could be expected to lead to greater impairments in daily functioning and quality of life,” emphasized the researchers.

They added that depression and other psychiatric comorbidities (like anxiety) are known to be common in people with idiopathic hypersomnia; a psychiatric comorbidity was noted in 44% of ARISE participants.

Additional analyses shows that the use of off-label medications for the treatment of idiopathic hypersomnia occurred in 89.3% of ARISE participants compared with 55.8% of those from a clinical study at baseline, and suggests the inadequacy of available treatments, all of which were used off-label for idiopathic hypersomnia at the time of the study.

Furthermore, even though 34.7% of participants noted moderately severe to severe levels of depressive symptoms on the PHQ-9, just 12.0% of ARISE participants reported having major depressive disorder.

Findings of this study supply needed transparency surrounding the experience of people with idiopathic hypersomnia regarding the many aspects of this disorder on daily life and show a symptom burden that reaches beyond just excessive daytime sleepiness.

Of note, participants reported feeling stigmatized to a high degree relative to the mean score from a clinical reference population on the Neuro-QoL Stigma domain (57.3 vs 49.7, respectively). This new finding shows a deeper negative social impact not previously described.

Future studies, including clinical trials, should target a formal comparison of differences in brain fog, difficulty waking up, fatigue, and sleep inertia between people with idiopathic hypersomnia with LST and those without LST.

A limitation of this study is that comprehensive demographic data, like race and ethnicity, were not obtained during the data collection process. Additionally, since the study was virtual, people who did not have internet access or the necessary electronic device were excluded.

“These results [impairments in quality of life, daily functioning, cognition, mood, relationships, and work productivity] indicate that measures of functional impairments are important to include in effectiveness trials for idiopathic hypersomnia treatments and provide a baseline against which treatment effectiveness may be evaluated,” concluded the researchers.


Stevens J, Schneider LD, Husain AM, et al. Impairment in functioning and quality of life in patients with idiopathic hypersomnia: the real world idiopathic hypersomnia outcomes study (ARISE). Nat Sci Sleep. 2023;15:593-606. Published 2023 Aug 2. doi:10.2147/NSS.S396641

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