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. 2025 Jul 30:17:1743-1755.
doi: 10.2147/NSS.S498432. eCollection 2025.

The Clinical and Economic Burden of Idiopathic Hypersomnia: Results from the Real-World Idiopathic Hypersomnia Total Health Model (RHYTHM) Study

Ragy Saad  1 , Sarah C Markt  1 , Prasheel Lillaney  1 , Deb A Profant  1 , Douglas S Fuller  2 , Elizabeth M Poole  1 , Trevor Alvord  3 , Patricia Prince  3 , Shaina Desai  3 , Marisa Whalen  2 , Weiyi Ni  1 , Jed Black  1   4
Affiliations

The Clinical and Economic Burden of Idiopathic Hypersomnia: Results from the Real-World Idiopathic Hypersomnia Total Health Model (RHYTHM) Study

Ragy Saad et al. Nat Sci Sleep. .

Abstract

Purpose: Limited research describes the clinical and economic burden of idiopathic hypersomnia. This study compared this burden in individuals with idiopathic hypersomnia against matched controls.

Patients and methods: This retrospective cohort study analyzed Merative™ MarketScan® US claims (12/31/2013-2/29/2020). Individuals were ≥18 years of age and continuously enrolled during a 2-year assessment period. Individuals with idiopathic hypersomnia entered the cohort upon their first idiopathic hypersomnia medical claim; they were matched 1:5 with non-idiopathic hypersomnia controls on age, sex, region, insurance type, and cohort entry date. Odds of comorbid conditions experienced by individuals in either cohort during the 2-year assessment were compared. Healthcare resource utilization (HCRU) was presented as percentages by care setting. Median medical cost per patient per year (PPPY) was the sum of inpatient, outpatient, and emergency costs. P-values were not adjusted for multiplicity.

Results: This analysis included 11,412 individuals with idiopathic hypersomnia and 57,058 matched controls. In both cohorts, median age was 45 years and 65% of individuals were female. Compared with matched controls, individuals with idiopathic hypersomnia had 1.6- to 4.4-fold higher odds (all P<0.0001) of grouped conditions defined by multilevel Clinical Classifications Software categories, from neoplasms to nervous systems diseases, including sleep-related conditions. Individuals with idiopathic hypersomnia had higher odds of all comorbid conditions evaluated, including sleep-related, cardiovascular and cardiometabolic, and neuropsychiatric conditions, compared with matched controls. Individuals with idiopathic hypersomnia had higher HCRU (outpatient, 100% vs 96.1%; emergency department, 46.6% vs 34.3%; inpatient, 10.2% vs 8.5%, all P<0.0001) than matched controls. Median medical costs PPPY were higher for individuals with idiopathic hypersomnia ($4854) than matched controls ($1348).

Conclusion: Compared with matched controls, individuals with idiopathic hypersomnia had a higher clinical burden, spanning multiple organ systems, and a higher economic burden. Individuals' clinical profiles may be considered when treating idiopathic hypersomnia and providing holistic care.

Keywords: cohort studies; comorbid conditions; healthcare costs; healthcare resource utilization; retrospective studies; sleep–wake disorders.

Plain language summary

Idiopathic hypersomnia is a rare sleep disorder that can impact quality of life, work, and overall wellbeing. People with this sleep disorder are often excessively sleepy throughout the day and can sleep for over 11 hours a day. This study aimed to learn about other conditions that people with idiopathic hypersomnia are likely to have, how often they go to the doctor, and how much their healthcare costs. The study compared people with and without idiopathic hypersomnia. To compare these 2 groups, healthcare claims data (medical bill information) were used. Each person with idiopathic hypersomnia was compared with 1 or more (up to 5) people without idiopathic hypersomnia who were similar in characteristics such as age, sex, where they lived, and their type of health insurance. The study found that people with idiopathic hypersomnia are more likely to have other medical conditions, such as brain and nerve diseases, heart-related diseases, and mental illnesses; see their doctors more often; and have higher medical costs than people without idiopathic hypersomnia. These results are important because they raise awareness around the hardship faced by people who have this rare sleep disorder and help doctors understand their needs.

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Conflict of interest statement

R Saad and P Lillaney are former full-time employees of Jazz Pharmaceuticals who, in the course of this employment, received stock options exercisable for, and other stock awards of, ordinary shares of Jazz Pharmaceuticals, plc. SC Markt, DA Profant, DS Fuller, EM Poole, M Whalen, and W Ni are full-time employees of Jazz Pharmaceuticals who, in the course of this employment, have received stock options exercisable for, and other stock awards of, ordinary shares of Jazz Pharmaceuticals, plc. T Alvord is a former full-time employee of Aetion, Inc. who, in the course of this employment, held stock options or equity in Aetion. P Prince and S Desai are full-time employees of Aetion, Inc. and hold stock options or equity in Aetion. J Black is a part-time employee of Jazz Pharmaceuticals and shareholder of Jazz Pharmaceuticals, plc. The authors report no other conflicts of interest in this work.

Figures

None
Graphical abstract
Figure 1
Figure 1
Study design.
Figure 2
Figure 2
Odds ratios (95% confidence intervals) of multilevel CCS categoriesa comparing individuals with idiopathic hypersomnia and matched controls.
Figure 3
Figure 3
Odds ratios (95% confidence intervals) of comorbid clinical conditions comparing individuals with idiopathic hypersomnia and matched controls. (A) Comorbid Sleep-Related Conditions. (B) Comorbid Cardiovascular or Cardiometabolic Conditions. (C) Comorbid Neuropsychiatric Conditions.
Figure 4
Figure 4
Percentage of individuals with HCRU visits, mean number of HCRU visits, and median number of HCRU visits: comparison of idiopathic hypersomnia and matched cohorts. (A) Percentage of Individuals With 1 Visit or More. (B) Mean Number of HCRU Visits. (C) Mean Number of HCRU Visits Among Those With 1 Visit or More.
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