Free Access to the Idiopathic Hypersomnia Severity Scale

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IHSS FormTake or administer this questionnaire now! The Idiopathic Hypersomnia Severity Scale (IHSS) is designed to help healthcare providers, researchers, and people who have IH monitor the severity of the spectrum of IH symptoms over time, including their functional consequences and changes in response to treatments. This validated tool was developed specifically for IH by sleep experts, with feedback from patients, and published in 2019. However, in large part due to cost constraints, it has not yet been widely used. Now, for the first time, the IHSS is accessible for free!

In late June 2021, Jazz Pharmaceuticals published SleepCounts, a website dedicated to providing IH resources for healthcare professionals. Among these is the IHSS, available as a downloadable PDF. This reliable 14-item questionnaire is the only clinical tool designed specifically to measure IH symptoms and provide a touchpoint that could “be useful for patient identification, follow-up visits, and IH management. The scale measures aspects of nighttime and daytime sleep symptoms and the sleep inertia related to each, as well as impaired daytime functioning due to hypersomnolence. Symptom frequency, intensity, and consequences are rated using a 3- or 4-point scale, with higher scores indicating more severe and frequent symptoms.” You can easily find this tool anytime, either at SleepCounts or on the Hypersomnia Foundation website’s Professionals dropdown menu.

Also in late June 2021, Jazz Pharmaceuticals published Living With IH, a website dedicated to people who have IH. Among the numerous resources on the site is the IHSS. Another link to the IHSS is on the Hypersomnia Foundation website’s Patients dropdown menu. Complete the questionnaire now, and discuss with your sleep doctor at your next appointment! For more tips on preparing for your appointment, check out Talking About IH With Your Doctor, and HF’s Self-Advocacy Tips.

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