Considerations for Professionals

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.

The Hypersomnias

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.

  • PWH’s sleep needs vary, so it is useful to discuss with PWH their typical sleep schedules, if they have one, and plan accordingly. Interruptions to their usual/ideal schedules are likely to negatively affect their cognition/sleepiness and may affect sleep study results. Some PWH can awaken predictably, but others cannot. Many have severe sleep inertia/sleep drunkenness upon awakening, and some experience sleep paralysis and/or hallucinations. Some sleep for a normal 7-9 hours each night, while others have “long sleep” of 9-12+ hours, and sometimes that length changes. Some require naps; others don’t and may even need to force themselves to stay awake by being as active as possible (sometimes to the point of hyperactivity), in order to avoid worsened symptoms that occur after a nap. 
  • PWH may experience impaired wakefulness/cognition that can rapidly/suddenly deteriorate, similar to delirium and therefore necessitating support typically provided for this condition. Especially as the need for sleep builds up or during periods of sleep inertia, confusion, irritability, emotional lability, etc. can quickly increase dramatically. The daily window of functioning for PWH may be quite small and inconsistent, and their level of alertness and cognition may wax and wane (even within the same appointment, depending on its length). Although a PWH may appear to be awake, this doesn’t necessarily mean they feel awake. These sleep disorders are “invisible,” and many PWH are used to “faking it” for as long as they can, in order to hold down a job, avoid ridicule from others, etc. Because some PWH have low awareness of their wakefulness, teams are advised to check in with them (more than once over a lengthy appointment) about how awake they feel (consider offering a pictorial sleepiness scale). 
  • PWH may mix up their words, miss cues, etc. When this happens, they may need some time and help processing the instructions.
  • Schedule changes, new events, and new tasks can provoke anxiety and be more challenging for PWH to process and accommodate due to their sleep needs, brain fog, and cognitive dysfunction. For example, PWH may benefit from advanced notice for appointments (they may not be available for the next day or able to return to the site after arriving home). PWH may benefit from more frequent reminders to complete study assessments, such as sleep and dosing diaries.

Communication Challenges

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. 

  • Regularly ask PWH about their current level of cognition and how close they are to needing sleep. Also ask about their specific sleep-related symptoms.
  • Ask PWH their preferred way(s) of communicating and receiving reminders, e.g., email, phone, text, etc. Do they prefer written, oral, and/or visual guidance? Are they likely to need extra reminders, help meeting deadlines, etc.? Do they have cognitive trouble with open-ended questions? What else can help their cognition/communication?
    • Ask whether their supporters should be included in communications. Supporters may be needed, especially for PWH with more significant sleepiness/cognitive impairments, to improve accuracy and timeliness by helping PWH organize paperwork, follow directions, respond to questions, collect medical records, meet deadlines, get to/from appointments, etc. 
    • Offer options to complete paperwork, e.g., at home, online, or via a conversation with a team member. 
    • Using PWH-friendly communication formats is likely to help: bullets, succinct wording, banners, checklists, more line spacing, and bold font or highlights/shading for the most salient information. Visually and verbally simplifying the text can make it easier for PWH to focus on the important details and understand instructions. 
    • Asking one question at a time and allowing PWH to add more to answers at a later time are likely to garner more accurate results. For example, afterthoughts can be more common for PWH, so if you ask what triggers sleepiness, the initial answer may focus on food triggers, but if prompted again, the PWH may remember other triggers or categories of triggers. 
  • Provide PWH with as much information as possible ahead of time. This will allow PWH to take their time (and choose a time when they feel less sleepy/cognitively impaired) going through the information, which will improve their preparation and understanding of what to expect. 
  • Provide PWH with clear and complete directions. For example, along with the site address, provide the suite number, parking information, signage; a comprehensive list of items they should bring; advice that a supporter may need to accompany them to help ensure their sleepiness/cognition won’t impair their safety/participation; etc. Clarity and thoroughness are also needed for directions about sleep diaries to be completed at home; timelines for completing forms; information PWH and their supporters should know for after the appointments; etc.    
  • PWH may need assistance gathering information and completing forms.
    • Gathering forms/records may entail reaching out to multiple sources, which can result in PWH feeling cognitively overwhelmed and being unable to finish the task in a timely way. If possible, consider asking a team member to assist with collecting medical records for PWH.
    • PWH may have cognitive difficulty with writing responses for open-ended questions/requests. Word prompts, opening statements, bullets, etc. can be very helpful.  

Effective Ways of Engaging

Considerations Relevant to Both Sleep Study Centers and Research Study Sites: 
  • Help ensure that site team members working with PWH are informed about and responsive to the unique needs of PWH and the specific sleep/research study protocols.
  • Because PWH often have variable cognition, it is especially important to help them plan ahead and to provide reminders. For example, inform them in advance about which food and/or beverages will be available during prolonged appointments or sleep studies (and if for sale, which payment types are accepted). If food and beverages are not available, or if PWH have specific food requirements/allergies/etc., remind PWH to bring their own.
  • Plan appointments that reflect the unique sleep requirements of PWH. Offer phone or video appointments when clinically feasible (keeping in mind that PWH may have additional struggles with technology due to their cognitive and sleep symptoms). It can be helpful to ask PWH when they are most able to keep and be wakeful for appointments. For example, morning appointments may be extremely difficult, if not impossible, for people with long sleep and/or significant sleep inertia (sleep drunkenness); people who need daytime naps may have other scheduling difficulties (e.g., for long in-person appointments, they may need to plan for naps on site); etc. For appointments that have several patient-reported assessments (such as cognitive tests and patient questionnaires), it is ideal to schedule at a time the PWH is likely to feel most alert. When possible, reduce the length of appointments by allowing for completion of assessments ahead of time.
  • Plan for PWH who experience significant heat/cold intolerance. If it is too hot, PWH may feel too sleepy to maintain cognitive function or even stay awake through the appointment; whereas being too cold can be atypically uncomfortable/painful, due to autonomic dysfunction/temperature dysregulation. Either temperature extreme can make sleep more difficult, so it is ideal to provide patients with individual control in sleep rooms.
  • Allow reasonable accommodations, when feasible. For example, because fluorescent lights may trigger worsened hypersomnolence and/or migraine headaches, PWH might request natural light only, via open window coverings or bringing in their own table lamp.
  • Encourage PWH to use relaxation/meditation techniques that they find helpful to reduce anxiety/stress. Remind PWH to practice in advance (and/or to ask their doctors for information about such techniques), so they can use these skills to reduce anxiety during sleep studies and other long appointments. (See Nonpharmacologic Treatments.)
  • Prepare PWH for discharge.
    • Be clear in advance about transportation policies and on-site recovery spaces if PWH have an overnight stay or a long or medicated appointment. (See Drowsy Driving Considerations in Non-Commercial Drivers for the Sleep Physician.) Where possible, have a dedicated recovery space for PWH to rest, take a nap, or sleep for a few additional hours when needed. When PWH finish a long or medicated appointment or wake from a sleep study, they may need quite a bit of time (e.g., a couple of hours) before they are cognitively able to finalize transportation arrangements or drive themselves home. These arrangements are best made in advance.
    • Assess readiness for release from the site. We recommend a brief exit interview to ensure the safety of the PWH upon release—in addition to recommending a recovery/sleep space for PWH following a sleep study or research study appointment. If the PWH indicates or the medical team believes that they are not ready for safe discharge, discuss with the patient to determine what is needed (e.g., more time in the recovery/sleep space, contact with their supporters, etc.). When a supporter needs to be present to receive the PWH upon release, further assistance may be needed, e.g., team member(s) to physically assist the supporter or a wheelchair for PWH who are so overwhelmingly sleepy that they cannot safely walk unassisted to the vehicle. NOTE: To help assess readiness, ask PWH prior to testing how/if they experience sleep inertia/drunkenness upon awakening, including how long it lasts.
Considerations Specific to Sleep Study Centers:
  1. Preparing for Sleep Studies
    • Coordinate ahead of time with PWH (and with their physician[s], as applicable) to: 1) ensure that all desired sleep study variables will be measured (e.g., ad lib extended sleep, upper airway resistance, etc.); and 2) confirm any plan to stop or adjust dosing of any medications/supplements/substances/etc. 
    • Depending on the studies planned and whether PWH must stop usual treatments for those studies, it may be necessary to advise PWH to sleep as much as they need for at least one week (and preferably longer) prior to the studies (while possibly maintaining a sleep diary ± using actigraphy). It is often very important to rule out insufficient sleep. If circumstances are such that PWH are not able to get sufficient sleep, it may be better to reschedule the sleep studies and/or help PWH access FMLA and/or short-term disability for the needed time period.
  2. Conducting Sleep Studies
    • Allow PWH to sleep as long as they need/normally do when undergoing an overnight sleep test (if possible/desirable for the planned testing). Going to bed at 11 PM and being awakened at 7 AM doesn’t reflect the reality of many PWH. Note: Diagnostic criteria for IH according to the ICSD-3 indicate that the diagnosis is supported by sleeping at least 11 hours throughout a 24-hour day. Consider extending the sleep study (e.g., if it happens to take PWH a long time to fall asleep), so that useful study information can still be obtained.
    • Understand that MSLTs (Multiple Sleep Latency Tests) and MWTs (Maintenance of Wakefulness Tests) can be extremely difficult for PWH; empathy for PWH undergoing these tests will be greatly appreciated. The protocols of the test may prevent them from getting the daytime sleep they require and may therefore significantly worsen their sleepiness (sometimes to the point that it is experienced as painful, as in sleep deprivation torture) and associated symptoms, e.g., cognitive dysfunction, triggering migraines/headaches, etc. (See AASM’s “Maintenance of Wakefulness Test”.) 
    • Realize that in spite of their hypersomnolence, PWH may have difficulty falling asleep when expected, waxing and waning without much predictability or for known causes. Therefore, it remains important to follow standard sleep study protocols to optimize the outside factors that can influence one’s ability to fall asleep, such as temperature, light, noise, interruptions, hunger, personal activity level (keyed up or not), and personal comfort level.
    • Understand that PWH may not be able to sleep during a sleep study due to anxiety, despite overwhelming, all-consuming, sleepiness. For example, the pressure experienced in having to “pass” the test to get treatment can worsen anxiety. Meditation/relaxation techniques can help. 
    • Understand that PWH’s symptoms around sleep times are often worsened (see the introduction to the Communication Challenges section above). For example, if a private bathroom is not available, they may need assistance simply to find one down the hall.
    • Be aware that lighting changes may be especially difficult for PWH during sleep studies. Light sensitivity can be heightened when PWH are experiencing severe sleep inertia (and may also be worsened by concomitant autonomic dysfunction). Also, both sleep deprivation and fluorescent lights can be a trigger for migraines, which in and of themselves can lead to severe light sensitivity. When protocols allow, avoid turning lights back on until the PWH is ready.

* 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.

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