5
Improving Awareness, Diagnosis, and Treatment of Sleep Disorders

CHAPTER SUMMARY The public health burden of chronic sleep loss and sleep disorders coupled with the low awareness among the general population, health care professionals, and policy makers requires a well-coordinated strategy to improve sleep-related health care. Increasing the awareness and improving the diagnosis and treatment of sleep disorders necessitates a multipronged effort that includes three key components: public education, training for health professionals, and surveillance and monitoring. First, a public health campaign is required to increase awareness among the general population. Second, specific education and training strategies are needed to increase awareness among health care professionals, including improved curriculum content and certification requirements. There are a number of surveillance and monitoring tools, but very few examine issues pertaining to sleep loss and sleep disorders. Thus, third, improved surveillance and monitoring of the general population is needed. The preeminent goal of this strategy is to create and sustain a broad societal commitment to engaging in proper sleep habits as a primary tenet of health. Such a commitment will involve participation by those individuals and organizations in a position to educate the public at national, state, local, and community levels—including K–12 education, colleges and universities, medical schools and other health profession education programs, hospitals, community clinics, local health departments, private industry (e.g., transportation, manufacturing facilities, nursing homes), and entertainment media. It will also require simultaneous investment in public education cam-



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5 Improving Awareness, Diagnosis, and Treatment of Sleep Disorders CHAPTER SUMMARY The public health burden of chronic sleep loss and sleep disorders coupled with the low awareness among the general population, health care professionals, and policy makers re- quires a well-coordinated strategy to improve sleep-related health care. Increasing the awareness and improving the diagnosis and treat- ment of sleep disorders necessitates a multipronged effort that in- cludes three key components: public education, training for health professionals, and surveillance and monitoring. First, a public health campaign is required to increase awareness among the general popu- lation. Second, specific education and training strategies are needed to increase awareness among health care professionals, including im- proved curriculum content and certification requirements. There are a number of surveillance and monitoring tools, but very few examine issues pertaining to sleep loss and sleep disorders. Thus, third, im- proved surveillance and monitoring of the general population is needed. The preeminent goal of this strategy is to create and sustain a broad societal commitment to engaging in proper sleep habits as a primary tenet of health. Such a commitment will involve participa- tion by those individuals and organizations in a position to educate the public at national, state, local, and community levels—including K–12 education, colleges and universities, medical schools and other health profession education programs, hospitals, community clinics, local health departments, private industry (e.g., transportation, manufacturing facilities, nursing homes), and entertainment media. It will also require simultaneous investment in public education cam- 173

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174 SLEEP DISORDERS AND SLEEP DEPRIVATION paigns for all age groups as well as a sustained effort to integrate sleep-related content into curricula of undergraduate health science programs all the way through continuing education programs for health professionals. CHALLENGES FACING INDIVIDUALS WITH SLEEP DISORDERS Sleep is often viewed by the general public as a “perceptual hole in time”—during which nothing productive occurs (Dement and Vaughn, 1999). One only has to examine common colloquialisms such as “don’t get caught napping,” “if you snooze you loose,” or “time is money” to gain a sense of the prevailing attitude that sleep is either optional, a luxury, or unimportant. In fact, being able to “get by on 4 hours of sleep” (and thus being able to increase productivity) is often considered an enviable trait. Daily sleeping and waking patterns are no longer driven by the light and dark cycle but, rather, by work schedules, economic interests, and in- creasing globalization. Unfortunately, the resulting “24/7” schedules are typically not optimal in terms of filling physiological requirements for sleep. Thus, daytime sleepiness and its consequences are becoming increasingly common problems affecting up to 15 percent of the population (Punjabi et al., 2003). For some, sleep disruption and constant sleepiness are often deemed an inevitable part of their social roles as spouses, workers, care- givers, and so on. Although improving diet and exercise as a part of a healthy lifestyle program is acceptable, sleep continues to be considered an expendable luxury (Dzaja et al., 2005). Thus, performance and social responsibilities may often take precedence over sleep, largely because of multiple role demands and expectations. Stigma is a problem that often complicates chronic illness. Acceptable standards for roles and activities are socially determined, and individuals who deviate from these expectations because of chronic illness are often labeled as “different” and are thus stigmatized (Falvo, 2005). Similarly, individuals with certain sleep disorders, which are often chronic in nature, may also be stigmatized because of the inability to fulfill role expectations. An additional factor that may underlie this stigma is that sleep is typically misperceived as an “asocial” activity. However, sleep is actually a very im- portant type of social interaction—an activity that is negotiated with self, family, friends, employers, lawmakers, fellow drivers on the road, and so on (Meadows, 2005). When, where, and how sleep occurs is an extremely important sociocultural matter (Taylor, 1993; Williams, 2002), and there can be considerable negative sociocultural consequences when the sleep be- havior, either intentionally or unintentionally, is unacceptable (Mehlman,

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175 IMPROVING AWARENESS, DIAGNOSIS, AND TREATMENT 2001; Moore et al., 2002). Obesity also presents another challenge to some individuals with sleep disorders. Obesity engenders negative feelings among caregivers, which may affect an individual’s health care (Banno and Kryger, 2004). The lack of awareness among the general public that results from the absence of sleep content in public health education programs causes pa- tients to be hesitant about discussing sleep problems with their health care providers. In addition, fear of being labeled as having a psychiatric problem or exhibiting drug-seeking behaviors are also deterrents (Culpepper, 2002). In the case of insomnia, the most common of all sleep-related complaints, patients typically do not seek help because they believe either that nothing can be done or that the health care providers will do nothing to address the problem (Engstrom et al., 1999). Patients with excessive daytime sleepiness represent the largest group seeking help at sleep laboratories but often only after they have encoun- tered numerous problems that interfere with performance of normal activi- ties of daily living, their ability to hold a job and maintain a marriage, interact socially, or have had an accident. All too often, these individuals have been labeled lazy or unmotivated. For children with narcolepsy, for example, the stigma associated with their increased daytime sleep tendency can affect social acceptance owing to unusual behavior as well as future risk of increased psychiatric disorders, potential obesity, and depressive symp- toms (Dahl et al., 1994; Guilleminault and Pelayo, 1998). Thus, individuals may have to overcome a stigma attached to having a sleep disorder, and seeking appropriate treatment is a very serious issue. Somnology Public Health Education Campaigns A review of the National Center on Sleep Disorders Research (NCSDR), Centers for Disease Control and Prevention (CDC), and private founda- tions demonstrate a limited investment in education and awareness cam- paigns directed toward increasing the general public’s knowledge of the health implications associated with chronic sleep loss and sleep disorders. National Center on Sleep Disorders Research Public Education Campaigns The NCSDR was established within the National Heart, Lung, and Blood Institute (NHLBI), partially in response to the previous experience and success the NHLBI had in public education campaigns (see below). As directed by the congressional authorization language, the NCSDR is re- sponsible for coordinating the “disseminat[ion of] public information con- cerning the impact of sleep disorders and sleep deprivation” (Appendix D)

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176 SLEEP DISORDERS AND SLEEP DEPRIVATION (U.S. Congress, Senate, 1993). It has also developed a variety of education materials; however, resources have not been devoted to an in-depth evalua- tion of the effectiveness of these materials. The primary education programs that the NCSDR have initiated include the following: • Sleep, Sleep Disorders, and Biological Rhythms is a curriculum supplement developed for grades 9 through 12 (NHLBI, 2003b). Approxi- mately 12,000 copies of the curriculum supplement have been sent to teachers. There have been more than 11,000 visitors to the sleep curriculum website and 10,000 downloads. More than 2,000 students entered sleep diary data on the Internet. • The Garfield Star Sleeper Campaign was designed to educate chil- dren, parents, educators, and health care providers about the importance of nighttime sleep during childhood (NHLBI, 2005b). • Time For Kids is a magazine on sleep that was developed and dis- tributed by the NCSDR to 30,000 third-grade teachers and the 750,000 children in their classes in connection with National Sleep Awareness Week (NHLBI, 2004). • The Healthy Sleep Handbook is a booklet that will be available to the general public and provide an overview of sleep disorders with signs and symptoms, consequences, and potential treatments. It will explain why sleep is needed, what happens if you don’t get enough sleep, and tips on how to obtain enough sleep (NHLBI, 2006). As these examples demonstrate, apart from campaigns directed toward children and adolescents, which have been inadequately evaluated, the NCSDR has not engaged in widespread multimedia public education cam- paigns directed toward other susceptible populations, including college stu- dents, adults (especially shift workers), elderly people, and high-risk minor- ity populations. This is in part owing to the limited resources of the NCSDR for public education (see Chapter 7). A potential strategy to strengthen these activities is to collaborate with other federal agencies including the CDC, as was directed by the congressional authorization; however, there has been limited involvement of the CDC and other federal agencies in these activities. Private Foundations Education and Awareness Campaigns Although limited, private foundations and professional societies, and to a lesser extent patient advocacy organizations, have developed a num- ber of public education programs. A highly successful example is the Na- tional Sleep Foundation’s (NSF) National Sleep Awareness Week cam- paign. This campaign coincides annually with the start of daylight savings

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177 IMPROVING AWARENESS, DIAGNOSIS, AND TREATMENT time and brings together over 750 sleep centers and 100 government agen- cies and other nonprofit organizations to plan and implement several pub- lic awareness and education projects. Activities have included sleep health fairs, lectures, and a public policy and sleep leadership forum. The NSF also conducts the Sleep in America poll, an annual telephone survey that gauges how and when Americans sleep, and created a multimedia educa- tional tool called Cycles of Sleeping and Waking with the Doze Family that illustrates information about sleep and includes a website, print materials, and CD-ROM. Although the Sleep Research Society (SRS) and the American Academy of Sleep Medicine (AASM) are primarily professional societies, they also have contributed to increasing the awareness among researchers, health care pro- viders, and the general public. For example the SRS is a cosponsor of the Trainee Day at annual meeting of Associated Professional Sleep Societies, recently published the Basics of Sleep Research guide, and established the Sleep Research Society Foundation, which annually supports up to six $20,000 grants. The AASM professional initiatives and public education efforts include among others, the CPAP (continuous positive airway pressure) Compliance Campaign, establishing accreditation programs for sleep tech- nologists and behavioral sleep medicine training programs, and assisting in the development of new clinical practice guidelines. Other private organiza- tions such as the American Sleep Apnea Association, Restless Legs Syndrome Foundation, and Academy of Dental Sleep Medicine have also created smaller public education tools such as patient education brochures, support groups, and online videos. Educational Activities of the Centers for Disease Control and Prevention The public education efforts coordinated by the CDC provide addi- tional models that could be used to increase awareness about the health implications of chronic sleep loss and disorders. The CDC has extensive experience in health education and has developed very effective programs in such diverse areas as obesity, colorectal cancer screening, and adolescent health. The CDC’s public information campaign to encourage physical activity includes a website that covers the importance of physical fitness including the health benefits, how much exercise is needed, how to overcome barriers to exercise, and specific tips for becoming more active. The website includes references to documents and other organizations that are resources for indi- viduals interested in this topic (CDC, 2006). The CDC also partners with other related government and private enti- ties to make these public health campaigns even more effective. For ex- ample, the Screen for Life campaign is a successful multimedia colorectal

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178 SLEEP DISORDERS AND SLEEP DEPRIVATION cancer screening education program in which the CDC has partnered with other organizations including state departments of health, the National Colorectal Cancer Research Alliance, and the Entertainment Industry Foundation. This program targets the general public as well as health profes- sionals and encourages colorectal cancer screening for every person after age 50. In addition to the education and awareness campaign, the CDC also developed a nationwide surveillance program to assess the capacity to per- form colorectal cancer screening tests and follow-up for the United States population aged 50 years or older. One advantage of working with an organization such as the CDC is its credibility and connections to individuals and organizations that can in- crease program effectiveness. For example, Katie Couric, NBC Today Show host, and Academy Award-winning actor Morgan Freeman have served as spokespersons for different campaigns. Given that chronic sleep loss and sleep disorders are a major public health problem, a public and professional campaign on sleep conditions would fit in well with existing CDC mission and programs. PUBLIC EDUCATION Sleep loss and daytime sleepiness affect 30 to 40 percent of the general population (Hossain and Shapiro, 2002); however, millions of individuals suffering from sleep disorders remain undiagnosed and untreated. For ex- ample, 80 to 90 percent of obstructive sleep apnea cases remain undiag- nosed, which increases the burden of this disorder (Young et al., 1997; Kapur et al., 2002). Most large-scale public health education programs and campaigns to date have focused primarily on diet and exercise and have not included adequate information about sleep. However, the time is right for the development of a sleep campaign. There is a beginning public awareness of the importance of sleep owing to recent articles in the popular press and television programs. Two concurrent strategies are required to increase awareness among the general public: a multimedia public education and awareness campaign, and improved education and training programs to increase awareness among health care professionals. National Sleep Public Education and Awareness Campaign Considering the burden that chronic sleep loss and sleep disorders have on all age groups, a multifocal campaign is required to improve awareness among children, adolescents, adults, elderly people, and high-risk popula- tions. The primary role of a campaign would be to improve recognition of the health and economic benefits of proper sleep, as well as educating par- ents and adults of the consequences associated with not receiving adequate

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179 IMPROVING AWARENESS, DIAGNOSIS, AND TREATMENT sleep. In this regard it will be important to inform the public and policy makers of the negative consequences of chronic sleep loss and sleep disor- ders. The campaign could argue that by taking specific personal actions to improve sleep hygiene, by recommending specific behaviors for all age groups, the adverse health and economic consequences could be reduced. The need for such a campaign rests on the following assumptions: • The general public does not recognize the prevalence of, or the con- sequence associated with chronic sleep loss and/or sleep disorders. • Most health care providers neither recognize the prevalence of, nor the many risks associated with, chronic sleep loss and/or sleep disorders. • Many of the technological advances made in the previous century (e.g., television, Internet) serve to deprive people, especially children and adolescents, of needed sleep. • Sleep loss and sleep disorders are associated with numerous other health complications • Increased understanding will lead to better sleep behaviors and thus improved health and function. Treatment of sleep problems, even if only behavioral and educational in nature, has the potential to increase an individual’s well-being and pro- ductivity. Such a campaign would offer new information to both the general population and health care providers. In addition, the activities of a broad sleep awareness campaign could be linked to all stakeholders— government agencies, private industry, foundations, professional societies, patient advocacy organizations, educators, colleges and universities, and community organizations. The committee envisions that wherever possible, a national campaign would coordinate activities with local needs and provide for the tailoring of its messages for different communities, including specific age groups, mi- nority groups, and shift workers. In addition, the committee envisions that the campaign should be developed in coordination with the NCSDR, CDC, the proposed National Somnology and Sleep Medicine Research and Clini- cal Network (see Chapter 8), the Department of Transportation, the De- partment of Labor, the Department of Education, other relevant federal departments and agencies, with input from private organizations such as the NSF and the AASM. Rigorous evaluation is a critical component. Fur- ther, this campaign could be integrated and coordinated with other public health campaigns, including those on obesity and heart disease, with the purpose of increasing the awareness among all Americans of the impor- tance of sleep and the adverse health and social consequences of poor sleep. Further, reinforcing messages should be provided in diverse media and ef- fectively coordinated with other events and dissemination activities.

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180 SLEEP DISORDERS AND SLEEP DEPRIVATION In proposing the National Sleep Public Education and Awareness Cam- paign, this committee considered and recognized the associated costs and challenges. These include the following: • Educating and convincing leaders in the public health field that the health and economic burden associated with chronic sleep loss and sleep disorders requires a national campaign. • The expenses associated with developing and operating a large na- tionwide public education and awareness program. • Coordinating federal, state, and local government agencies that would be involved in a campaign. • Coordinating the activities of foundations, professional societies, and private companies. • The large number of individuals experiencing sleep loss or sleep dis- orders span all age groups, each of which will require a specific strategy. In summary, although evidence is limited, previously coordinated health education campaigns demonstrate the potential value of efforts designed to increase the awareness of both the prevalence and conse- quences of chronic sleep loss and sleep disorders. For example, broad coordinated national campaigns such as the NHLBI’s National High Blood Pressure Campaign (Roccella, 2002), the National Institute of Child Health and Human Development’s (NICHD) Back to Sleep Campaign, the CDC’s Screen for Life colorectal cancer campaign, the antitobacco efforts of the late 1960s and early 1970s and the late 1990s and early 2000s (Warner, 1981; Siegel, 2002), and the antidrug campaigns of the middle 1980s (IOM, 2002) have had corresponding reductions in risky behavior. Back to Sleep Campaign The Back to Sleep program offers an example of a very successful public education awareness campaign that arose from a strong associative discovery between infant sleeping position and the risk of sudden infant death syndrome (SIDS) (Willinger, 1995; Kemp et al., 1998). In 1993, the American Academy of Pediatrics released its first policy statement on re- ducing the risk of SIDS that recommended that infants be placed on their backs while sleeping. The following year, the NICHD spearheaded the Back to Sleep campaign. Cosponsors included the Maternal and Child Health Bureau, the American Academy of Pediatrics, the SIDS Alliance, and the Association of SIDS and Infant Mortality Programs. The NCSDR was involved in planning and developing communication materials for the campaign.

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181 IMPROVING AWARENESS, DIAGNOSIS, AND TREATMENT Before it was instituted, the death rate for SIDS was approximately 1.3 per 1,000 live births (CDC, 1996). Postsurveillance analysis showed a 50 percent reduction in SIDS rates since the Back to Sleep campaign began (NICHD, 2003). The campaign increased public awareness of SIDS risks and safety through a series of radio and television public service announce- ments and distribution of more than 20 million pieces of literature to health care professionals and the public. National High Blood Pressure Education Campaign Another successful public education program is the National High Blood Pressure Education Program. It was established by the NHLBI in 1972 “to reduce death and disability related to high blood pressure through programs of professional, patient, and public education” (NHLBI, 2005a). The NHLBI coordinates a group of federal agencies, voluntary and profes- sional organizations, state health departments, and numerous community- based programs. At the core of the education activities is the program’s coordinating committee, which follows a consensus-building process to identify major issues of concern and to develop program activities. Each representative from the coordinating committee member organizations work together to provide program guidance and to develop and promote educa- tional activities through their own constituencies. The National High Blood Pressure Education Program is responsible for the five following areas: in- formation collection and dissemination; public, patient, and professional education; community program development; evaluation and data analysis; and technology transfer and electronic distribution of materials. The education campaign does not depend greatly on advertising, but rather relies heavily on actions by other institutions: campaign organizers working with physicians’ organizations to encourage physicians to provide advice about high blood pressure consistent with national guidelines; pro- posing stories to newspapers and television and radio that convey the prior- ity messages; and developing affiliations with, and providing materials to, grassroots organizations interested in hypertension (Roccella, 2002). When the program began there was very little awareness and treatment for hyper- tension. Less than one-fourth of the American population understood the relationship between hypertension and stroke and hypertension and heart disease and only 31 percent sought treatment. Today, more than three- fourths of the population recognizes that relationship and over 53 percent seek treatment (NHLBI, 2005a).

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182 SLEEP DISORDERS AND SLEEP DEPRIVATION Recommendation 5.1: The National Center on Sleep Disorders Research and the Centers for Disease Control and Prevention should establish a multimedia public education campaign. The National Center on Sleep Disorders Research—working with the Centers for Disease Control and Prevention, the proposed Na- tional Somnology and Sleep Medicine Research Network, private organizations and foundations, entertainment and news media, and private industry—should develop, implement, and evaluate a long- term national multimedia and public awareness campaign directed to targeted segments of the population (e.g., children, their parents, and teachers in preschool and elementary school; adolescents; col- lege students and young adults; middle-aged adults; and elderly people) and specific high-risk populations (e.g., minorities). To implement this recommendation, the following should be done: • This campaign should be developed in coordination with appro- priate federal departments and agencies and with input from inde- pendent experts to focus on building support for policy changes. • This campaign should be built upon and integrated within exist- ing public health campaigns, including those focused on diet and exercise (e.g., obesity and heart disease). • Reinforcing messages disseminated through multiple media should be effectively coordinated with events targeting providers of health information such as physicians, nurses, and teachers. PROFESSIONAL TRAINING AND AWARENESS IS REQUIRED Societal misperceptions also stem from a lack of professional knowl- edge about the benefits and impact of sleep. Therefore, the success of the proposed National Sleep Public Education Awareness Campaign particu- larly relies on increased awareness and more sleep-oriented curricula for the health care providers. Further, underutilization of sleep centers in the United States to assist in diagnosing and treating sleep disorders partly stems from both the lack of public and professional awareness and insufficient training of primary caregivers (Wyatt, 2004). Without widespread recognition of the importance of sleep on the part of both the public and health care pro- viders, society is at significant risk for sleep-related health problems. If health care providers are unaware of the symptoms and problems that oc- cur as a result of compromised sleep, they simply will not pursue the topic with patients. Thus, patient contacts with the health care system are often major sources of “missed opportunities” to diagnose sleep problems and share important information about sleep. In addition, increasing the aware-

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183 IMPROVING AWARENESS, DIAGNOSIS, AND TREATMENT ness of health care providers also offers an opportunity to attract health care professionals into the field (see Chapter 7 for detailed discussion). Those who receive sleep-related education are more likely to ask individu- als about past or current sleep problems (Haponik and Camp, 1994). Some progress is being made in developing strategies to improve education and awareness among health care professionals. For example, competency- based goals and teaching strategies for sleep and chronobiology in undergradu- ate medical education have recently been proposed (Harding and Berner, 2002; Federman, 2003). Similar curricula content has also been developed for under- graduate and graduate nursing programs (Lee et al., 2004). A survey conducted in 1992 revealed that minimal, if any, didactic content on sleep was included in medical and nursing programs (Buysse et al., 2003; Rosen et al., 1998; NHLBI, 2003a). Although curricula in medical and nursing school have been updated since 1992, and there are no recent surveys, anecdotal evidence suggests that sleep-related content is still not adequately addressed. Considerable progress remains to be made. Treatment of Sleep Disorders Requires Interdisciplinary Training Sleep disorders vary widely in their complexity, their comorbidities, the risks they represent, and the scope of their manifestations (Chapter 3). They may be a symptom of a behavioral or social change, a secondary manifesta- tion associated with a primary disease, or may be the primary problem. Examination of the disorders associated with each of these categories demonstrates the requirement for educated multidisciplinary health care specialists who have the capacity to recognize, diagnose, and treat chronic sleep loss and sleep disorders. At minimum, there are 13 different health care specialties and subspecialties that are involved in diagnosis and treat- ment—anesthesiology, cardiology, dentistry, endocrinology, immunology, neurology, nursing, nutrition, otolaryngology, pediatrics, psychiatry, psychol- ogy, and pulmonology. For example, individuals with obstructive sleep apnea (OSA) typically require recognition by a primary care physician, and diagnosis and treatment from a sleep specialist who is a pulmonologist, neurologist, psychiatrist, or otolaryngologist. Following, or concurrent with, diagnosis and treatment, the chronic nature of a sleep disorder also may require being seen by a specialist (e.g., endocrinologist for diabetes and obesity, cardiologist for hypertension). Patient and family education, pri- mary care, follow-up and support are often provided by nurses with exper- tise in the field. Therefore, proper treatment of chronic sleep loss and sleep disorders requires multidisciplinary care. However, as discussed below, there has been very little education of health care professionals about the pathology, etiology, or treatment of chronic sleep loss and sleep disorders.

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206 SLEEP DISORDERS AND SLEEP DEPRIVATION The NHIS has only one question related to sleep: “On average how many hours of sleep do you get a night (24-hour period)?”. This question was included in the supplemental surveys administered in 1977, 1985, and 1990, and was added to the core survey in 2004. Based on these data, the percentage of adults who reported sleeping 6 hours or less jumped from approximately 20 percent of the population in 1985 (Schoenborn, 1986) to 25 percent in 2004 (National Center for Health Statistics, National Health Interview Survey, 2004) across all age groups. One important feature of the NHIS is its use as a sampling frame for other national surveys such as the National Survey of Family Growth and the Medical Expenditure Panel Survey. Because of its relevance for this re- port, the latter is described in more detail below. Vital Statistics and the National Death Index Vital statistics include data on all births and deaths. The latter are based on information contained in the death certificate and include identifying information (name and social security number), demographic data, and data on underlying and contributing causes of death. NCHS’s National Death Index is a resource available to investigators seeking information surround- ing the death of individual participants in prospective cohort studies. This is useful for investigators exploring the association between sleep disorders identified in study participants and risk of mortality from certain causes (e.g., cardiovascular, disease, hypertension, depressive disorders, and inju- ries). It also provides the opportunity to conduct aggregate analyses of dis- tribution and trends of mortality directly attributable to sleep problems. National Health Care Survey The National Health Care Survey is a collection of health care provider surveys that obtains information about the facilities that supply health care, the services rendered, and the characteristics of the patients served (Table 5-3). Each survey is based on a multistage sampling design that includes health care facilities or providers and patient records. Data are collected directly from the establishments and/or their records, rather than from the patients. The participating surveys identify health care events—such as hos- pitalizations, surgeries, and long-term stays—and offer the most accurate and detailed data on diagnosis and treatment, as well as on the characteris- tics of the institutions. These data are used by policy makers, planners, researchers, and others in the health community to monitor changes in the use of health care resources, to monitor specific diseases, and to examine the impact of new medical technologies, to mention a few.

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207 IMPROVING AWARENESS, DIAGNOSIS, AND TREATMENT TABLE 5-3 Surveys Included in the National Health Care Survey’s System National Ambulatory Medical Care Survey National Employer Health Insurance Survey National Health Provider Inventory National Home and Hospice Care Survey National Hospital Ambulatory Medical Care Survey National Hospital Discharge Survey National Nursing Home Survey National Survey of Ambulatory Surgery Two of the participating surveys are of particular relevance for the study of health care resources utilization in relation to sleep disorders: the Na- tional Ambulatory Medical Care Survey and the National Hospital Dis- charge Survey. The National Ambulatory Medical Care Survey The National Ambulatory Medical Care Survey, which has been con- ducted annually since 1989, is a national survey designed to meet the need for objective, reliable information about the provision and use of ambula- tory medical care services in the United States. Findings are based on a sample of visits to non-federally employed office-based physicians who are primarily engaged in direct patient care. Specially trained interviewers visit the physicians prior to their participation in the survey in order to provide them with survey materials and instruct them on how to complete the forms. Data collection from the physician, rather than from the patient, provides an analytic base that expands information on ambulatory care collected through other NCHS surveys. Each physician is randomly assigned to a 1-week reporting period. During this period, data for a systematic random sample of visits are recorded by the physician or office staff on an encounter form provided for that purpose. Data are obtained on patients’ symptoms, physicians’ diagnoses, and medications ordered or provided. The survey also provides statistics on the demographic characteristics of patients and services provided, including information on diagnostic procedures, patient management, and planned future treatment. The National Hospital Discharge Survey The National Hospital Discharge Survey (NHDS), which has been con- ducted annually since 1965, is a national probability survey designed to provide information on characteristics of inpatients discharged from non-

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208 SLEEP DISORDERS AND SLEEP DEPRIVATION federal short-stay hospitals in the United States. The NHDS collects data from a sample of approximately 270,000 inpatient records acquired from a national sample of about 500 hospitals. Only hospitals with an average length of stay of fewer than 30 days for all patients, general hospitals, or children’s general hospitals are included in the survey. However, the NHDS excludes data from a number of hospitals, including federal, military, and Veterans Affairs (VA) hospitals; hospital units of institutions (such as prison hospitals); and hospitals with fewer than six beds staffed for patient use. The data includes information related to the personal characteristics of the patient—age, sex, race, ethnicity, marital status, expected sources of pay- ment, and diagnoses and procedures coded to the International Classifica- tion of Diseases, 9th Revision, Clinical Modification. It also includes ad- ministrative items such as admission and discharge dates (which allow calculation of length of stay). Annually, data from the NHDS are made available to the public. As an example of the amount of data available in this survey, the estimated number of all listed sleep disorders diagnoses in NHDS in 2003 was 322,000. Although the NHDS excludes information obtained through VA hospitals, there is a similar database provided by the VA that has been used to examine the association of psychiatric disorders and sleep apnea (Sharafkhaneh et al., 2005). Data from these surveys could be used to monitor prevalence of com- plaints related to sleep disorders; trends in sleep-related diagnosis and ser- vices; characteristics of patients, characteristics of health care providers; use of medical technology and how use differs according to region or patients’ access to care; emergence of alternative care sites; and medication use in ambulatory care settings. Behavioral Risk Factor Surveillance System Funded by CDC, the Behavioral Risk Factor Surveillance System com- plements the NCHS national surveys by providing state-specific data on prevalence of the major behavioral risks among adults associated with pre- mature morbidity and mortality. The main objective is to collect data on actual behaviors, rather than on attitudes or knowledge, that would be especially useful for planning, initiating, supporting, and evaluating health promotion and disease prevention programs at the state and local levels. The Behavioral Risk Factor Surveillance System is an annual telephone survey (based on random digit dialing) in each participating state. The tele- phone surveys methodology was chosen not only because of cost advan- tages but also because telephone surveys were considered especially desir- able at the state and local level, where the necessary expertise and resources for conducting area probability sampling for in-person household inter- views were not likely to be available.

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209 IMPROVING AWARENESS, DIAGNOSIS, AND TREATMENT The survey started in 1984 with 15 participating states. By 1994, all states, the District of Columbia, and three territories were participating. Although the survey was designed to collect state-level data, a number of states from the outset stratified their samples to allow them to estimate prevalence for regions within their respective states. The CDC developed a standard core questionnaire for states to use to provide data that could be compared across states. The emergence of telemarketing and increasing use of mobile phones and automatic answering systems resulted in dwindling response rates over the last few years. However it remains as the only state-specific source of health-related data nationwide. There are currently no sleep-related ques- tions in Behavioral Risk Factor Surveillance System. Medical Expenditure Panel Survey Funded by the Agency for Healthcare Research and Quality, the Medi- cal Expenditure Panel Survey is a national probability survey designed to continually provide policy makers, health care administrators, businesses, and others with timely, comprehensive information about health care use and costs in the United States, and to improve the accuracy of their economic projections. The survey began in 1977 and comprises three com- ponent surveys: the Household Component, the Medical Provider Compo- nent, and the Insurance Component. The Household Component provides a variety of measures of health status, health insurance coverage, health care use and expenditures, and sources of payment for health services. The Medical Provider Component covers hospitals, physicians, and home health care providers and is meant to estimate the expenses of people en- rolled in health maintenance organizations and other types of managed care plans. Finally the Insurance Component is used to analyze the behav- ior and choices made with respect to health care use and spending, as well as the amount, types, and costs of health insurance available to Americans through their workplace. Medicare Current Beneficiary Survey Funded by Centers for Medicare and Medicaid Services, the Medicare Current Beneficiary Survey is a continuous, multipurpose survey of a na- tionally representative sample of aged, disabled, and institutionalized Medi- care beneficiaries. The Medicare Current Beneficiary Survey is the only com- prehensive source of information on the health status, health care use and expenditures, health insurance coverage, and socioeconomic and demo- graphic characteristics of the entire spectrum of Medicare beneficiaries. The purpose of the survey is to determine expenditures and sources of payment

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210 SLEEP DISORDERS AND SLEEP DEPRIVATION for all services used by Medicare beneficiaries; to establish all types of health insurance coverage and relate coverage to sources of payment; and to trace changes over time, such as health status, and the impacts of programmatic changes. It includes survey data on measures of health status and access to care that are linked to the physicians and hospital claims data. The survey was initiated in 1991 and is designed to support both cross-sectional and longitudinal analysis. Data are collected through interviews that take place over 4-month intervals. Each interview includes questions regarding the household composition; an accounting of the individual’s health insurance coverage; a review of an individual’s health care utilization in the period since the last interview; details about each type of service, provider charac- teristics, and medicines prescribed; and a detailed account of charges and payments associated with these health care events. The interview data are linked to Medicare claims. Youth Risk and Behavior Survey The Youth Risk Behavior Surveillance System includes national, state, and local school-based surveys of representative samples of 9th- through 12th-grade students (National Center for Chronic Disease Prevention and Health Promotion, 2005). These surveys are conducted every 2 years, usually during the spring semester. The national survey, conducted by CDC, provides data representative of high school students in public and private schools in the United States. The state and local surveys, conducted by de- partments of health and education, provide data representative of the state or local school district. The Risk Behavior Surveillance System was devel- oped in 1990 to monitor priority health risk behaviors that contribute mark- edly to the leading causes of death, disability, and social problems among youth and adults in the United States. These behaviors, often established during childhood and early adolescence, include: tobacco use, dietary be- haviors, physical activity, alcohol and other drug use, sexual behaviors, and behaviors that contribute to unintentional injuries and violence. Despite the importance of sleep deprivation and other sleep disorders in young adoles- cents (see Chapter 3), no questions on sleep and sleep behaviors have ever been included in the survey. Process for Inclusion of New Components in Surveys One impediment for the addition of greater sleep-related content in surveillance and monitoring instruments is the process required to have new components added. In addition to a high standard of scientific merit, inclusion of new components also often requires specific sponsorship. The

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211 IMPROVING AWARENESS, DIAGNOSIS, AND TREATMENT following is a description of the criteria for adding components or ques- tions to NHANES. Other surveys and monitoring instruments have similar requirements. Criteria for Adding Components to NHANES Criteria for adding components or questions to NHANES and the NHIS are based on scientific merit, public health importance, costs, sponsorship, lead time, feasibility and logistics in the context of the rest of the survey components, priority ranking in relation to competing components, and survey burden. NHANES runs in 2-year cycles and is governed by an internal committee formed by NCHS leadership, epidemiologists, statisticians, and physicians. Every 2 years, this committee requests proposals for adding components to the upcoming 2-year cycle, including both questionnaire components and mobile examination center exams. Proposals are received through a com- petitive bidding process and are expected to include detailed rationale for the public health relevance of the proposal, eligibility criteria (e.g., age, gender eligibility), detailed estimates of costs, personnel needs, amount of time required to do the exam, needs for laboratory or other type of equip- ment, statistical power estimates, quality assurance/quality control proce- dures, and the availability of external funds to subsidize the additional com- ponent. The committee then makes a preliminary determination as to its suitability before it reviews the proposal. Proposals under consideration are then examined by a team of NCHS personnel and proponents to carefully study and work out all the details and logistics of the implementation of the new exam. New components to the exam are typically introduced for a single 2- year cycle, sometimes for multiple cycles (e.g., the sleep questionnaire is introduced for two cycles from 2005 to 2008). Eventually components are rotated off when sufficient data and sample size are acquired; some exams may be rescheduled at a later date in order to monitor changes and trends overtime. Other NCHS surveys follow similar procedures for review of added components with a few differences. Both public and private organizations are eligible to propose new com- ponents to add to the NHANES and other NCHS surveys. Federal, state, or local government agencies can provide funds to the NCHS to cofinance the costs of the proposed additions. For example, the sleep questions on NHANES are sponsored by the NHLBI. Nonprofit organizations and pri- vate companies can also make proposals but cannot provide funds to the NCHS; cosponsorship from private industry, however, can occur through money deposited in the CDC foundation.

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