The Information Needs of Sleep Apnea Patients: An Annotated Bibliography

Beth Caldwell LI861 Emporia State University May 5, 2012

This annotated bibliography includes resources for patients with sleep apnea. Sleep apnea is a condition that causes a person to pause or stop breathing while they sleep. People with this condition wake up many times while sleeping, gasping for breath. Sleep apnea is a chronic condition, and a patient with sleep apnea will need treatment in order to avoid serious health problems such as high blood pressure, stroke, cardiovascular disease and mental health problems. This condition affects people of all ages, nationalities, races and backgrounds. I chose this topic because it is one that affects me personally, having received a sleep apnea diagnosis in 2007. I received no written materials or resources from the various doctors, specialists and respiratory therapists I consulted, so seeking information was largely up to me, the patient. Information Needs An estimated 20 to 25 million Americans have sleep apnea (Pascualy, 2008), though many of them do not have a formal diagnosis. Sleep apnea affects about 20 percent of men and 9 percent of women. It is usually diagnosed through a sleep study. Treatment options include the use of a CPAP or BiPAP, surgery, or sleeping with an appliance in their mouth. While this bibliography focuses mainly on the information needs of the sleep apnea patient themselves, their families -- especially partners who share a bed -- have also been affected by this condition and subsequent treatment. According to Baker and Manbeck (2002), these family members may also have information needs separate from that of the patient. This bibliography includes several different types of sources to meet the information needs of sleep apnea patients. It includes a mix of print and online sources, videos and compilations. It takes into account the varying levels of knowledge about sleep apnea, different

levels of literacy, and language barriers. There are several sources that give facts about the condition, information about treatment options, including specific resources about CPAP use, which is the most common treatment that patients experience. There are many sources that include real life stories and anecdotes from other people diagnosed with sleep apnea. According to Strauss (1975), personal accounts are important sources of information for people seeking information about their disease. At least one website listed here allows sleep apnea information seekers to connect directly with others with sleep apnea. Most researchers agree that adherence to sleep apnea treatments (such as CPAP) is the most important thing a sleep apnea patient can do to keep the condition from negatively affecting their lives. This means that meeting the information needs of sleep apnea patients is vital to improving their quality of life and ensuring future good health.

Bibliography American Sleep Apnea Association. (n.d.) Retrieved from http://www.sleepapnea.org/ The American Sleep Apnea website includes easily accessible information about sleep apnea symptoms, tests and treatment. The website also has an online bookstore, newsletter, blog and forums for sleep apnea patients. Patients can locate local support groups in their area through this website. Sleep apnea in children is also addressed on this website.

Baker, L., & Manbeck, V. (2002). Consumer Health Information for Public Librarians. Lanham, MD: Scarecrow Press.

Carey, B. (2007, August 30). The Necessity, and Elusiveness, of Sleep. The New York Times. Retrieved from http://www.nytimes.com/ref/health/healthguide/esn-sleepapneaess.html This article from The New York Times covers a variety of different sleep disorders, and the importance sleep has in peoples health and well being. There is a focus on side effects of sleep disorders, and the science behind good or bad sleep. It highlights some of the most recent research and experiments happening in the study of human sleep.

Chokroverty, S. (2009). Questions and Answers About Sleep Apnea. Sudbury, MA: Jones and Bartlett Publishers. This book, written for those with little to no knowledge about sleep apnea, covers everything from the definition of sleep to treatments for those diagnosed with sleep apnea. The end of the book contains a helpful glossary of related terms. Personal anecdotes are interspersed with facts and health related problems for sleep apnea patients.

MedlinePlus. (n.d.) Sleep Apnea. Retrieved from http://www.nlm.nih.gov/medlineplus/ sleepapnea.html The MedlinePlus sleep apnea page is a compilation of information about sleep apnea, including the latest news, links to authoritative information sources about the condition, clinical trials, statistics, videos and organizations of interest to sleep apnea patients. This website has also been translated into several other languages, including Spanish, Chinese, Japanese, French and Arabic.

National Heart Lung and Blood Institute. (2011). What is CPAP? Retrieved from http://www.nhlbi.nih.gov/health/health-topics/topics/cpap/ For many sleep apnea patients, continuous positive airway pressure, or CPAP, will be the main form of treatment. The National Heart Lung and Blood Institute has compiled this thorough resource about how CPAP works, and describes step by step what a patient will experience when beginning this treatment after diagnosis. It includes an animated illustration of how CPAP helps sleep apnea patients breathe while sleeping.

National Institutes of Health (Producer). (n.d.) What Can You Do About Sleep Apnea? Retrieved from http://nihseniorhealth.gov/sleepandaging/sleepdisorderedbreathing/ video/slp2_na.html?intro=yes Published by the National Institutes for Health, this video focuses on one mans story of living with sleep apnea. It illustrates his experience as well as his wifes experience living with someone who has sleep apnea. The video talks about symptoms, treatment, and includes a demonstration of how to use a CPAP machine. This is a valuable resource for patients with low literacy or who prefer visual/audio education.

Pascualy, R.A. (2008). Snoring and Sleep Apnea: Sleep Well, Feel Better. New York, NY: Demos Medical Publishing. Written by a physician who specializes in sleep medicine, this book is a primer for those seeking information about sleep apnea, its causes, health effects, and treatment. It specifically addresses sleep apnea in infants, children, teens, and women, as well as the link between obesity and sleep apnea. There is a section for those interested in alternative medicine. It includes an appendix with resources, services and products for people with sleep apnea. The goal of the book is to create an effective consumer as patients go on their sleep apnea journey.

Strauss, A.L. Chronic Illness and the Quality of Life. (1975). St. Louis, MO: C.V. Mosby.

U.S. Department of Transportation. (2004). Driving When You Have Sleep Apnea (DOT HS 809 685). Retrieved from http://permanent.access.gpo.gov/gpo4259/Apnea2005.pdf One of the symptoms of sleep apnea is falling asleep while driving. This government pamphlet addresses the risks and concerns of driving with sleep apnea. Though this is a brief and very specific information sources, it is easy to read and includes phone numbers and websites for further information. This information is particularly relevant to patients who drive for a living, such as long haul truck drivers. Conclusion Sleep apnea is not an illness that receives as much attention as other chronic conditions in America. For example, a simple search in PubMed for the term sleep apnea brings up 25,000 results, whereas a search for the term diabetes brings up more than 400,000 results. Most of the research and writing about this condition has been conducted in the past 10-20 years,

indicating that it is still a largely unknown condition to many. Nonetheless, there are some excellent sources of information out there for patients with sleep apnea. The American Sleep Apnea website is a great jumping off point for someone curious about sleep apnea, whether they have been diagnosed or not. The books, such as Pascualy and Chokroverty texts, do a good job of covering all the details of a sleep apnea diagnosis and what a sleep apnea patient can expect. The New York Times article from 2007 shows that the condition is beginning to gain attention in mainstream media, as more and more Americans receive their sleep apnea diagnosis and begin their journey to better health.