Considerations for Professionals
Guide for Sleep Study Centers and Research Study Sites Involving Participants Who Have Hypersomnias
Guide for Sleep Study Centers and Research Study Sites Involving Participants Who Have Hypersomnias
Published February 22, 2022
Revised March 2, 2022
Vetted by Our Medical Advisory Board
Person(s) with hypersomnias (PWH) have unique needs. Many, if not most, have been misdiagnosed a number of times over a period of many years and have had numerous doctor appointments and medical tests, including multiple sleep studies. The intent of this guide* is to provide suggestions that may help teams at sleep study centers and research study sites (whether they perform sleep studies or not) to interact more effectively with PWH, and thereby improve site safety, quality of data collection, etc., by focusing on select manifestations of the diagnosis, communication challenges, and effective ways of engaging this particular population of patients. Given that hypersomnias are rarely-diagnosed, teams at both sleep study centers and research study sites may be unfamiliar with the details of these diagnoses. Additionally, centers/sites may not be managed by sleep medicine specialists (who may themselves not be particularly experienced with PWH, depending on the focus of their individual medical practices). For providers who are already familiar with hypersomnias, this content provides a helpful review and can also be used to help train team members.
Symptoms vary among PWH, especially between those diagnosed with narcolepsy type 1 (NT1) and those diagnosed with idiopathic hypersomnia (IH) or narcolepsy type 2 (NT2). Chronic excessive daytime sleepiness and the associated cognitive challenges (such as deficits in memory, attention, and concentration) are most common, but some PWH also experience severe sleep inertia (i.e., sleep drunkenness), sleep paralysis, hallucinations when going in and out of sleep (hypnagogic/hypnopompic), automatic behaviors, autonomic dysfunction, etc. (see IH Summary, About IH, About Related Disorders, and Classification of Hypersomnias). It is important to ask PWH about their specific symptoms. Note: If the PWH uses the term fatigued or exhausted, it is important to clarify in order to understand how they may be challenged following directions, i.e., do they mean 1) sleepy/hypersomnolent; 2) mentally fatigued/brain fog; 3) physically fatigued; 4) a combination; or 5) something else.
Many symptoms of hypersomnias can lead to significant communication challenges. In addition to daytime brain fog/sleepiness, the following can all worsen cognition and communication even further: 1) severe sleep inertia, which can last for hours after a sleep session; 2) sleep-related hallucinations, which can lead to confusion and fright; and 3) automatic behaviors, which include partial to total loss of recall. As a PWH’s need for sleep escalates, and also around sleep times in general (whether a daytime obligatory nap or a sleep study), these symptoms generally become more likely and more severe. Therefore, it is helpful to communicate in advance and at times of better wakefulness, as much as possible.
* This guide was developed by the Hypersomnia Foundation and approved by its Medical Advisory Board, Board of Directors, and Patient Advisory and Advocacy Council (PAAC). It is based on suggestions from a focus group of patient-experts with IH (idiopathic hypersomnia) and NT2 (narcolepsy type 2); the focus group was conducted in accordance with standard qualitative methods of research practice. For the purposes of this guide, PWH refers exclusively to those diagnosed with IH or NT2. These recommendations do not necessarily apply equally to all people who have IH and NT2, and they may also apply to other people, not only but including those who have other hypersomnias, e.g., narcolepsy type 1 (NT1) and Kleine-Levin syndrome (KLS), as well as those yet-to-be-diagnosed with a hypersomnia.