Jazz Pharmaceuticals and Hypersomnia Foundation Launch Campaign to Increase Understanding and Awareness of Idiopathic Hypersomnia
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IH is an often debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness (the inability to stay awake and alert during the day resulting in the irrepressible need to sleep or unplanned lapses into sleep or drowsiness). In addition to excessive daytime sleepiness, symptoms may include severe sleep inertia (prolonged difficulty waking with frequent reentries into sleep, confusion and irritability), a core symptom of IH, as well as prolonged, non-restorative nighttime sleep and long and unrefreshing naps.1,2,3,4
People living with IH face challenges in managing their condition as healthcare providers underdiagnose IH and there is a current lack of
To better determine physicians' understanding of IH, as part of the campaign, Jazz and the
The results from the online survey, conducted by Toluna Analytics, underscore the need for more education and awareness of IH among healthcare providers. Only 36% of physicians reported that they believe other healthcare providers have a sufficient understanding of IH, while more than 90% said that physicians need more education about the sleep disorder.5
Healthcare providers' low familiarity with IH may contribute to patients experiencing long delays in receiving an accurate diagnosis—up to 10 to 15 years in some cases.6,7 Notably, 87% of the surveyed physicians stated that diagnosing IH can be challenging, with more than half of healthcare providers (57%) reporting that they have personally misdiagnosed IH as another condition before providing the correct diagnosis. Also, a strong majority of providers (86%) reported that they think that patients who have IH are often misdiagnosed with depression and/or anxiety.5
"I'm happy to see that Jazz and the
Given the misdiagnosis and delay in diagnosis, more education and awareness of IH is needed within the sleep community. Nearly all healthcare providers (92%) said they agree that the negative impact of IH is significantly underestimated and that it deserves greater recognition among sleep disorders.5
"We're very pleased to be partnering with Jazz to raise awareness of idiopathic hypersomnia. We know that patients in the IH community face many challenges—and one of those challenges is that most physicians do not have a deep understanding of this sleep disorder," said
Survey respondents were also asked about their patients' perceptions, with a strong majority of healthcare providers saying that people living with IH are frustrated with the healthcare community (87%) and their disease management (95%). They also said patients feel their condition is not understood by the general public (66%).5
"As a person living with IH, I can't stress enough how important it is that physicians and the greater public understand the disorder," said Meghan M. "I went nearly 5 years without a definitive diagnosis of what was causing my relentless need for sleep and extreme difficulty waking up, but when I was finally told by my doctor that I had IH, I felt a sense of relief. There needs to be more education and awareness of the disorder so other people who are living with it don't have to struggle as long as I did to receive a diagnosis."
Jazz and the
"At Jazz, we are committed to raising awareness of IH and are proud to be partnering with the
Jazz and the
About the Survey
This survey was conducted online by Toluna Analytics on behalf of
About Idiopathic Hypersomnia
Idiopathic hypersomnia is an often debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness (the inability to stay awake and alert during the day resulting in the irrepressible need to sleep or unplanned lapses into sleep or drowsiness) that is not caused by other medical, behavioral or psychiatric conditions.1,2,3,4 Symptoms may also include a prolonged main sleep episode of more than 9 hours or a sleep duration of 11 hours or longer over a 24-hour period, prolonged, non-restorative nighttime sleep and long and unrefreshing naps, and severe sleep inertia (prolonged difficulty waking, with frequent reentries into sleep, confusion and irritability).1,2,3,4 Although there are overlapping clinical features with narcolepsy, idiopathic hypersomnia is a condition with its own specific diagnostic criteria.1,2,8 Idiopathic hypersomnia is a debilitating illness that can significantly affect social, school and occupational functioning.9,10,11,12 Insurance claims data suggest the number of people diagnosed with idiopathic hypersomnia and actively seeking healthcare is 37,000 patients in the
The Hypersomnia Foundation engages, informs and champions our global community to improve the lives of people with idiopathic hypersomnia and related sleep disorders.
To find out more about idiopathic hypersomnia and related disorders, please visit https://www.hypersomniafoundation.org or follow us on Twitter, Instagram or Facebook.
About Jazz Pharmaceuticals plc
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- Billiard M, Sonka K. Idiopathic hypersomnia. Sleep Med Rev. 2016 Oct;29:23-33. doi: 10.1016/j.smrv.2015.08.007
- Trotti LM. Idiopathic Hypersomnia. Sleep
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Idiopathic Hypersomnia Survey. Conducted by Toluna Analytics for Jazz Pharmaceuticalsand the Hypersomnia Foundation, February 2021.
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30.10.1274. PMID: 17969461; PMCID: PMC2266276.
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Sleep Medicine Clinics. 2012 June;7(2):283-289. doi: https://doi.org/10.1016/j.jsmc.2012.03.012 Jazz Pharmaceuticals, Inc, Data on file. JZP258-2020-047-29 Oct 2020. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. Fifth Edition (DSM-5). 2020.
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Jan 3. PMID: 29250981.
- Ozaki A, Inoue Y, Hayashida K, Nakajima T, Honda M, Usui A, Komada Y, Kobayashi M, Takahashi K. Quality of life in patients with narcolepsy with cataplexy, narcolepsy without cataplexy, and idiopathic hypersomnia without long sleep time: comparison between patients on psychostimulants, drug-naïve patients and the general Japanese population. Sleep Med. 2012 Feb;13(2):200-6. doi: 10.1016/j.sleep.2011.07.014. Epub 2011
Dec 3. PMID: 22137109.
- Hess G, Mehra R, Carls G, et al. 0625 US Prevalence of Narcolepsy and Other Sleep Disorders From 2013–2016: A Retrospective, Epidemiological Study Utilizing Nationwide Claims. Sleep. 2018 Apr;41(suppl_1):A232-A232. doi: 10.1093/sleep/zsy061.624
Jazz Pharmaceuticals, Inc, Data on file.
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