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Adult Sleep Disorders Patient Education Websites

James A. Rowley, MD
Associate Professor of Medicine
Division of Pulmonary, Critical Care & Sleep Medicine
Wayne State University
Detroit, MI

Introduction

Sleep medicine is a rapidly expanding field with an explosive growth in the number of sleep centers, physicians practicing sleep medicine and the number of patients seeking evaluation (1).  Sleep disorders range from more common disorders such as insomnia, sleep-disordered breathing and restless leg syndrome (RLS) to uncommon disorders such as narcolepsy and parasomnias. Proper education about sleep and sleep medicine is an essential component of the evaluation and management of many sleep disorders, particularly insomnia, sleep-disordered breathing, RLS and narcolepsy.  Therefore, up-to-date resources geared to patient education would be helpful to the busy sleep clinician.  These resources could either be a primary source of patient education materials given out by the clinician or could be a website patients are referred to for more information.

The goal was to find websites that provided general information on sleep and on a wide variety of sleep disorders, not just sleep-disordered breathing. Websites intended for adults were the sites of interest; pediatric sites will not be reviewed at this time. However, as will be discussed in the Search section, there are few websites that have the breadth of information sought.

Last Update: November 2009

Search

The first search for websites addressing the topic of sleep disorders patient education websites used a search engine (Google™) with the search terms “Sleep Disorders Patient Education.” This search yielded a total of 502,000 sites. A quick review of the first 120 websites to determine appropriateness of inclusion was performed. Of these sites, the majority continue to be the websites of individual sleep disorders centers (mostly from academic medical centers) and were primarily provided general information on making appointments for sleep evaluation with brief comments on sleep disorders in general.  The next largest category was commercial websites. For this update, I could not find websites from the National Sleep Foundation (NSF), or patient advocacy websites in the first 120 websites, as I did in 2006. (Note that if you use just the term “sleep” in the Google search, the NSF website does appear as #2.)  One new site in 2009 was the HelpGuide.org site (see below).

The remaining sites discussed are from previous secondary searches or otherwise known to exist by the author. They have all been re-reviewed in 2009.

Based upon the results above, the review has been divided into the following sections: professional organizations, patient support/advocacy sites, government websites and other websites.

Best Websites

American Academy of Sleep Medicine/Sleepeducation.com

This is a comprehensive patient education website sponsored by the American Academy of Sleep Medicine.

  1. Authority: This is the patient education website of the American Academy of Sleep Medicine (AASM; www.aasmnet.org), the major professional organization dedicated to sleep medicine and sleep research. The authors of most of the content are not identified. However, a reviewer for each page discussing the various sleep disorders is listed. Rating: 4

  2. Currency: Most of the content appears to be reviewed between 2005 and 2007, but most of the basic information on sleep disorders is timeless. Nevertheless, I would like to have seen some updates or at least acknowledgment that the articles have been reviewed in the last 2 years. Rating: 4

  3. Accuracy: The pages reviewed were accurate. Rating: 5

  4. Navigation & Readability: Overall, this is a well-done website. The homepage has both a navigation menu on the left as well as the major sections identified in the main body of the page. The site is searchable by keywords and graphics are appropriate to the site. Rating: 5

  5. Utility: There are a wide variety of resources on this website, all free to the general public. There are pages on pretty much every recognized sleep disorder (only website that has such a comprehensive list). A whole section of information concerns CPAP, including tips for improving compliance. There are links to press releases regarding the sleep research published in American Academy of Sleep Medicine (ASSM) journals. There is a link to www.sleepcenters.org, the AASM website of accredited sleep facilities. Finally, there is a forum section (registration required) and an Ask the Sleep Expert section. Rating: 5

Summary: Overall, this is an excellent website with a wealth of information on sleep disorders and management of sleep-disordered breathing. It could use a few updates but still receives the highest rating.*****

National Sleep Foundation

This is a large comprehensive patient education website sponsored by the largest patient sleep advocacy group, the National Sleep Foundation. The site has been re-organized since the last review.

  1. Authority: The National Sleep Foundation (NSF) is a recognized patient advocacy group whose board of directors includes many well-known sleep researchers and clinicians. The board of directors can be easily found on the website. The foundation receives grant support from a variety of sources, including industry. There is a statement of editorial independence on the site. Authors are not listed for the majority of pages on sleep disorders. Reviewers are provided for many but not all. Rating: 4

  2. Currency: The pages do not give an update year. However, the information is current. Rating: 3

  3. Accuracy: The webpages reviewed were accurate. Rating: 5

  4. Navigation & Readability: The website has improved navigability from the last review. Google ads are at the bottom of every page. Rating: 4

  5. Utility: There are many patient and physician educational resources on this site with information on all of the major sleep disorders (including shift work and jet leg, which are not featured on many other sites) as well as articles on the relationship between sleep and major disorders (such as ADHD, dementia, depression etc.). There are quizzes regarding sleep and sleep disorders. There are also videos from some sleep experts, primarily dealing with insomnia and getting a good night’s sleep. The site also features results of the annual NSF surveys. There are also many pages regarding the activities of the NSF. Rating: 4

Summary: This is a well-done site with many resources for patients and physicians.****1/2

National Heart, Lung and Blood Institute

This website is sponsored by the NHLBI.

  1. Authority: This website is sponsored by the National Heart, Lung and Blood Institute of the National Institutes of Health. However, authorship of specific publications is not given. Rating: 4

  2. Currency: The webpages on sleep-disordered breathing, RLS and narcolepsy have been all updated since November 2008. Rating: 4

  3. Accuracy: The articles on the sleep disorders are accurate. Rating: 4

  4. Navigation & Readability: All the links to sleep disorders are on one webpage. Rating: 4

  5. Utility: Information is limited to what are considered the four major sleep disorders: obstructive sleep apnea (OSA), insomnia, narcolepsy and RLS. New this year is an article on sleep studies and CPAP, excellent video demonstrations of upper airway collapse and the effect of CPAP on the OSA and CPAP pages and a podcast on insomnia. Articles are divided into multiple pages. Rating: 3

Summary: While sponsored by a respected source, the website is limited by the few sleep disorders discussed. However, the site has been updated since last year.***1/2

National Institute of Neurological Disorders and Stroke Disorder Index

This website is sponsored by the National Institute of Neurological Disorders and Stroke (NINDS).

  1. Authority: This website is sponsored by the National Institute of Neurological Disorders and Stroke of the National Institutes of Health. All pages are authored by the Office of Communications and Public Liaison. It was unclear if experts reviewed the pages. Rating: 4

  2. Currency: The RLS and narcolepsy pages reviewed were updated in 2009, the sleep apnea page in 2007. Rating: 4

  3. Accuracy: The pages reviewed were accurate. Rating: 5

  4. Navigation & Readability: Users must select from alphabetical lists for specific diseases. Only three sleep disorders are listed: sleep apnea, narcolepsy and RLS. The sleep apnea page provides a link to a Brain Basics: Understanding Sleep page. On each page, there are multiple links to organizations related to the disorder (such as the Restless Leg Foundation on the RLS page). Rating: 3

  5. Utility: The pages on RLS and narcolepsy are excellent. There is a link for a printable page for physicians interested in using the fact sheets with patients. The sleep apnea page is rudimentary and incomplete. The links to other organizations are helpful. Rating: 3

Summary: Good fact sheets but a limited number of disorders are discussed.***

Talk About Sleep

This is an industry sponsored comprehensive patient education website with many features including chat and message boards.

  1. Authority: This is an industry sponsored website. The primary sponsors are the major companies that manufacture/sell CPAP/BPAP equipment (their logos are at the bottom of every page). The management team and medical advisory board are easily found. The management team is comprised of individuals with an interest in sleep disorders (they or family members have a sleep disorder). The advertising policy of the website is posted on the Terms of Service page. Unfortunately, the authors of most of the pages on specific sleep disorders are not identified. If the advisory board has a role in reviewing the posted information it is not stated. Rating: 3

  2. Currency: There are no dates on the majority of articles. Several articles are cited from government sources and date back to the mid-1990s (though there is a disclaimer stating this fact). It would be nice if there were updates for such topics as sleep apnea and cardiovascular disease. However, most of the basic information is timeless but I noticed that a medication listed for RLS is no longer marketed in the US. Rating: 3

  3. Accuracy: The articles are accurate. Rating: 4

  4. Navigation & Readability: This is an easily navigated website with an excellent toolbar at the top with all the major sections listed. The main webpage also has links to most of the major sections of the website. Rating: 5

  5. Utility: The site has many features that could be helpful to a patient with sleep disorders. There is an extensive collection of articles on the major sleep disorders. An information page provides details on what patients can expect on the night of a sleep study. There are message boards and chat services for all of the major sleep disorders as well as several pages of personal testimonials. There is also a section on fibromyalgia. There are links to the American Board of Sleep Medicine Diplomates, American Academy of Sleep Medicine accredited centers. There are also links to other news/information sleep pages from other sites. Finally, there is an online store that sells CPAP/BPAP products and light boxes. Rating: 4

Summary: Extensive resources available to the average sleep disorder patient. The site would have received a higher rating if authors were clearly identified and if the information was clearly dated/updated.****1/2

Sleepnet

This is a website that attempts to link all of the sleep information on the Internet, making it both comprehensive and overwhelming.

  1. Authority: The stated goal of the website is to link all of the sleep information located on the Internet. It has a wide variety of links to professional organizations’ sites, news releases, information pages and other miscellaneous webpages that deal with sleep. It is not a primary education site per se. It is organized by a webmaster using the online alias, Sandman, who according to the website is a sleep technologist. It appears to be supported using Google ads, which appear at the right hand column and in the middle of many pages. Rating: 3

  2. Currency: The website itself is current though some of the links are to pages that are several years old. The news page is from 2007. Main pages of the sleep disorders do not appear updated. Rating: 3

  3. Accuracy: Original content was accurate but given the extensive links and public forums, the overall accuracy is not easily ascertained. Rating: 2

  4. Navigation & Readability: The website is easy to navigate through. The few pages on specific disorders are easily readable. Rating: 4

  5. Utility: The site has many features that could be helpful to a patient with sleep disorders. There are links to professional organizations, advocacy organizations and sleep centers (though how specific sleep centers get listed is not made clear). There are extensive public forum areas for all of the major sleep disorders (all with recent postings). Finally, there is a webpage that provides links to online stores that sell CPAP/BPAP products. Note there is little original material on this site. The information pages provided for the major sleep disorders are short and author/reviewer for these pages are not given. Rating: 4

Summary: This site has extensive links to many webpages that represent both professional, industry and personal websites. However, the presence of advertising on most pages is troublesome and the expertise of the webmaster, who has provided reviews of most of the linked webpages, is unknown. For the patient who has sufficient time to surf the Internet, this website provides ample links from which to choose.***

SleepChannel.com

This is a commercial patient education website, one of many sponsored by Healthcommunites.com Inc. One of its better features from last year, online streaming videos that discuss the various sleep disorders, could not be found this year.

  1. Authority: The stated goal on the homepage is to “provide comprehensive, trustworthy information about sleep stages and sleep- related conditions.” This is a commercial site sponsored by Healthcommunities.com Inc. The homepage states it is developed and monitored by board-certified physicians, and there is a page listing the members of the physician board. The extent of their involvement is unknown. Individual articles on sleep disorders do not list authors. The specialty of the reviewer, one of the website MD founders, is not known. Rating: 3

  2. Currency: The majority of the articles were written in 2000 and last reviewed in 2007. Rating: 3

  3. Accuracy: Original content was reasonably accurate and easy to read. Rating: 4

  4. Navigation & Readability: The website is easy to navigate through. However, most of the original content on a specific sleep disorder is organized over several pages, requiring the reader to continually link to a new page (with new ads). Rating: 4

  5. Utility: The site has many features that could be helpful to a patient with sleep disorders. All of the major disorders are discussed both in written format. Rating: 4

Summary: This site is an overall good site that should appeal to physicians and their patients. The rating would be higher if the authors of the articles were identified, the articles were not split over multiple pages, a more recent review had been performed and the distracting Google ads were absent.***

WebMD Sleep Disorders Health Center

The site contains multiple pages of information on sleep disorders as well as a page of informative videos.

  1. Authority: This is an entry point for information related to sleep disorders on the WebMD site, a respected site for patient information on medical disorders. There is inconsistency as to whether articles have authors listed and/or reviewers. Many of articles listed another organization as the author. Rating: 3

  2. Currency: The website and the information on sleep disorders are mostly current, with most pages indicating review or update between 2006 and 2008. Rating: 4

  3. Accuracy: All of the major sleep disorders, including sleep apnea, narcolepsy, insomnia and RLS are covered in depth. Original content was accurate, provided a broad overview and was easy to read. Rating: 4

  4. Navigation & Readability: The website is easy to navigate through. However, the overall organization of the site is by categories such as Overview and Facts, Symptoms and Diagnostic Tests. Within each category there are multiple further subchapters that cover the major disorders. However, if you are on the diagnosis page, there is no clear link to the treatment page of the same disorder except for sleep apnea and insomnia. Thus, for many of the disorders all of the content on one disorder is not organized together. There was no change for 2009. Rating: 2

  5. Utility: The site has many features that could be helpful to a patient with sleep disorders. There are many tip pages to help patients get a better night sleep. The videos are short and succinct but often preceded by an advertisement. All of the major disorders are discussed in written format. There are community chat boards. Rating: 4

Summary: This site is an overall excellent site that should appeal to physicians and their patients. Rating would be higher if the authors of the articles were identified and the information better organized (not split over multiple pages).****

Helpguide.org

This is a new site founded this year. The site covers a broad variety of topics related to mental/emotional health, healthy living and family relationships (only the sleep pages were reviewed).

  1. Authority: The stated goal of the whole site is "to help people understand, prevent, and resolve life's challenges." The editorial team, editorial review board and steering committee are clearly listed, though none include a medical or osteopathic physician. All of the articles have listed contributors from the editorial team/review board with last modification date. The website is supported by private donations. There is no advertising. Rating: 3

  2. Currency: The website and the information on sleep disorders are mostly current, with most pages indicating last modification in 2008. Rating: 4

  3. Accuracy: Original content was accurate, provided a broad overview and was easy to read. Rating: 4

  4. Navigation & Readability: The website is easy to navigate through. The pages are well-organized, easy to read with highlighted tables with the most important information. Rating: 4

  5. Utility: Each of the sleep disorder pages ends with links to other organizations and articles. Only the four major sleep disorders are discussed (OSA, RLS, insomnia and narcolepsy) but there are excellent pages on the basics of sleep, sleep hygiene and sleep medications Rating: 3

Summary: A very good website overall with excellent articles on sleep tips, medications and the four major sleep disorders. Rating would be higher if more sleep disorders were discussed and if there had been physician input into the writing/editing****

Other Important Sites

  • American Sleep Apnea Association
    http://www.sleepapnea.org

    This site has several excellent information pages on sleep apnea and CPAP. Also has a sleep apnea forum on which patients can ask each other questions. It includes forums on CPAP, oral appliances, pediatrics and a forum for spouses. There is a section on pediatric sleep apnea as well

  • Narcolepsy Network
    http://www.narcolepsynetwork.org

    This website has a frequently asked questions (FAQ) page on narcolepsy, which is quite extensive. However, it does not have any downloadable brochures or have patient forums.

  • Restless Leg Foundation
    http://www.rls.org

    This site provides an overview of RLS including a FAQ page, and has several downloadable patient and healthcare provider publications. The information is up-to-date; authors/dates of pages are given. It has personal testimonials from patients with RLS and a forum/chat room section and provides additional information on support groups and research studies.

  • American Insomnia Association
    http://www.americaninsomniaassociation.org

    A website could not be found for this organization in September 2009.

Disclaimer

The author has no personal or financial interest in any of the websites discussed above. The author has no personal or financial interest in any of the websites discussed above.

References

  1. Punjabi NM, Welch D, Strohl K. Sleep disorders in regional sleep centers: A national cooperative study. Sleep 2000;23:471-480.