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Adolescent Health Services: Missing Opportunities (2009)

Chapter: 1 Setting the Stage

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Suggested Citation:"1 Setting the Stage." National Research Council and Institute of Medicine. 2009. Adolescent Health Services: Missing Opportunities. Washington, DC: The National Academies Press. doi: 10.17226/12063.
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Suggested Citation:"1 Setting the Stage." National Research Council and Institute of Medicine. 2009. Adolescent Health Services: Missing Opportunities. Washington, DC: The National Academies Press. doi: 10.17226/12063.
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Suggested Citation:"1 Setting the Stage." National Research Council and Institute of Medicine. 2009. Adolescent Health Services: Missing Opportunities. Washington, DC: The National Academies Press. doi: 10.17226/12063.
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Suggested Citation:"1 Setting the Stage." National Research Council and Institute of Medicine. 2009. Adolescent Health Services: Missing Opportunities. Washington, DC: The National Academies Press. doi: 10.17226/12063.
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Suggested Citation:"1 Setting the Stage." National Research Council and Institute of Medicine. 2009. Adolescent Health Services: Missing Opportunities. Washington, DC: The National Academies Press. doi: 10.17226/12063.
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Suggested Citation:"1 Setting the Stage." National Research Council and Institute of Medicine. 2009. Adolescent Health Services: Missing Opportunities. Washington, DC: The National Academies Press. doi: 10.17226/12063.
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Suggested Citation:"1 Setting the Stage." National Research Council and Institute of Medicine. 2009. Adolescent Health Services: Missing Opportunities. Washington, DC: The National Academies Press. doi: 10.17226/12063.
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Suggested Citation:"1 Setting the Stage." National Research Council and Institute of Medicine. 2009. Adolescent Health Services: Missing Opportunities. Washington, DC: The National Academies Press. doi: 10.17226/12063.
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Suggested Citation:"1 Setting the Stage." National Research Council and Institute of Medicine. 2009. Adolescent Health Services: Missing Opportunities. Washington, DC: The National Academies Press. doi: 10.17226/12063.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

1 Setting the Stage Summary • Adolescents aged 10–19 made up 14 percent (42 million) of the total population of the United States in 2006. • The racial and ethnic makeup of the U.S. adolescent population is becoming more diverse. The correlations among minority racial and ethnic status, poverty, and lack of access to quality health services for adolescents are strong. Without specific attention to disparities in access to quality health services among adolescent members of minority racial and ethnic groups and actions to re- duce them, such disparities may increase. A dolescence is a critical period of transition between childhood and adulthood. It is a period when significant physical, psychological, and behavioral changes occur and when young people develop many of the habits, behavioral patterns, and relationships they will carry into their adult lives. This chapter demonstrates how the healthy development of adolescents matters. While most adolescents in the United States appear to be healthy, many engage in risky behavior and develop unhealthful hab- its that can jeopardize their immediate health and safety and contribute to   Aswill be elucidated later in this chapter, adolescence is defined in this report as ages 10–19. 17

18 ADOLESCENT HEALTH SERVICES poor health in future years. Others experience physical and mental illnesses, including chronic conditions, during adolescence and into adulthood. At the same time, adolescence is a critical period for developing positive be- havioral patterns, healthful habits, and independent decision-making skills that create a strong foundation for healthy lifestyles and behavior over the full life span. Therefore, receiving quality health promotion and disease prevention services, supportive counseling, and chronic care treatment and management, as well as engaging in positive activities and personal skill building, plays a crucial role in nurturing healthy adolescents, as well as in reducing their risk for many adult diseases and injuries. Indeed, according to a joint report by the World Health Organization, United Nations Popula- tion Fund, and United Nations Children’s Fund (1995, p. 3), “One of the most important commitments a country can make for future economic, social, and political progress and stability is to address the health and de- velopment needs of its adolescents.” It is of concern, therefore, that adolescents have one of the lowest rates of primary care use of any age group in the United States (Hing, Cherry, and Woodwell, 2006) and one of the highest rates of being under- or un- insured (Agency for Healthcare Research and Quality, 2006; U.S. Census Bureau, 2006b). Moreover, some aspects of adolescent health—such as the escalating rate of adolescent obesity and related illnesses—have become increasingly problematic over time (Institute of Medicine, 2005). In addi- tion, certain groups within the adolescent population characterized by se- lected circumstances—for instance, those who are in the foster care system; homeless; lesbian, gay, bisexual, or transgender (LGBT); or in the juvenile justice system—may be especially prone to participate in risky behavior and lack community, family, or economic support. Consequently they may face special challenges that put them at particular risk for poor health outcomes (D’Augelli, Hershberger, and Pilkington, 1998; Saewyc et al., 1999, 2006; Tonkin, 1994). Being part of a racial or ethnic minority group, being poor, or being in a family that has recently immigrated to the United States may also contribute to decreased access to quality and appropriate health ser- vices (Weinick and Krauss, 2000; Wise, 2004). There is some disagreement as to whether health status is dependent more on health services or on other factors, such as genetics, income, or behavior (Association of Maternal and Child Health Programs and the National Network of State Adolescent Health Coordinators, 2005; Fuchs, 1974, 1991; Garfinkel, Hochschild, and McLanahan, 1996). Nonetheless,   The group referred to as “lesbian, gay, bisexual, and transgender” sometimes also encom- passes the term “questioning” and is commonly referred to by the acronym LGBT (or GLBT) or LGBTQ (or GLBTQ). For the purposes of this report, the identifier “lesbian, gay, bisexual, and transgender” or LGBT is used.

SETTING THE STAGE 19 it is clear that a number of potential impediments to quality health services for adolescents exist, including a lack of financial support, insurance, physi- cians and other health professionals who are trained in adolescent health, and transportation; cultural and language barriers; discomfort with or lack of understanding of who provides adolescent health services; and concern about the confidentiality of health services (Hock-Long et al., 2003; Kodjo, Auinger, and Ryan, 2002; Perloff, 1992; Sanci, Kang, and Ferguson, 2005; St. Peter, Newacheck, and Halfon, 1992). Another barrier to quality adolescent health care is the fact that ado- lescents do not fit easily into current models of health care. There are two prevailing models of health care: one focused on children and the other on adults. In a pediatric approach to medicine, the parent is the responsible agent, and the focus is on nurturing the patient in a family context. In an adult-centered approach, the patient is the responsible agent; the provider offers information with which the patient makes decisions; and the focus is on the individual, not the family. The treatment of adolescents does not fit well into either model, and their needs change as they progress through adolescence. While some practitioners focus on caring for adolescents, their numbers are few. A third model—family medicine, in which the family, including children, adolescents, and adults, is cared for by a family physi- cian or nurse practitioner—may offer another alternative, but the number of family medicine practices is limited. Over the past decade, numerous published studies have addressed par- ticular aspects of adolescent health (Ozer et al., 2003; Park et al., 2005, 2006). Much of that research, however, is focused on specific health do- mains, injuries or illnesses, special interests, or problem behavior—such as mental health, teen pregnancy, sexually transmitted infections, substance abuse, tobacco use, violence, diet and exercise, or oral health. Often ne- glected is a more comprehensive strategy for adolescent health services that integrates behavioral, psychological, physical, and social aspects of health. Moreover, much of the research available to help understand differ- ent types of services, organizational models, service settings, and provider skills that influence the health, safety, and well-being of today’s adolescents is scattered among different disciplines and literatures, including pediatrics, reproductive health, social work, mental health, and education (The Cen- ter for Development and Population Activities, 2003; Chung et al., 2006; Committee on Adolescence, 2008; Kopelman, 2004; Lear, 2002; National Association of Social Workers, 2002; Rand et al., 2007). Experimentation with different models for providing health services to adolescents has occurred at the local, state, and national levels, and the health, safety, and well-being of adolescents are receiving attention from diverse public and private agencies. Fundamentally, however, the research being conducted is not always comprehensive, the health service approaches

20 ADOLESCENT HEALTH SERVICES are not always the same, and the services or systems are not always inte- grated. Gaps in the service delivery system for today’s adolescents are com- mon, particularly for those who are most vulnerable to risky behavior and poor health or who face major barriers in gaining access to primary and preventive services. STUDY CHARGE, APPROACH, AND SCOPE Study Charge Concerned about these issues, the National Academies’ Board on Chil- dren, Youth, and Families formed the Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development, with funding from The Atlantic Philanthropies. The National Research Council (NRC) and the Institute of Medicine (IOM) appointed the 19-member committee in May 2006 to study adolescent health services in the United States and develop policy and research recommendations that would highlight critical health needs, promising service models, and components of care that could strengthen and improve health services for adolescents and contribute to healthy adolescent development. Committee members brought to this task expertise in the areas of adolescent health; general pediatrics; health care services; adolescent development; school- based health services; health care finance; mental health; alcohol, tobacco, and drug abuse treatment; sexual health; oral health; nursing; public policy; statistics/epidemiology; preventive medicine; program evaluation; injury research; law; and immigrant/minority adolescents (see Appendix C for bi- ographies of the committee members). The committee was asked to explore the following issues: • Features of quality adolescent health services. What does the evi- dence base suggest constitutes high-quality health care and health promotion services for adolescent populations? What do parents, community leaders, and adolescents themselves perceive to be es- sential features of such services? • Approaches to the provision of adolescent health services. What are the strengths and limitations of different service models in addressing adolescent health care needs? What lessons have been learned in efforts to promote linkages and integration among ado- lescent health care, health promotion, and adolescent development services? What service approaches show significant promise in offering primary care as well as prevention, treatment, and health promotion services for adolescents with special health care needs and for selected adolescent populations?

SETTING THE STAGE 21 • Organizational settings and strategies. What organizational set- tings, finance strategies, and communication technologies promote engagement with, access to, and use of health services by adoles- cents? Are there important differences in the use and outcomes of different service models among selected adolescent populations on the basis of such characteristics as social class, urbanicity, ethnicity, gender, sexual orientation, age, special health care needs, and risk status? • Adolescent health system supports. What policies, mechanisms, and contexts promote high-quality health services for adolescents? What innovative strategies have been developed to address such concerns as decision making, privacy, confidentiality, consent, and parental notification in adolescent health care settings? What strat- egies help adolescents engage with and navigate the health care system, especially those at significant risk for health disorders in such areas as sexual and reproductive health, substance use, mental health, violence, and diet? What barriers impede the optimal provi- sion of adolescent health services? • Adolescent health care providers. What kinds of training programs for health care providers are necessary to improve the quality of health care for adolescent populations? Study Approach A variety of sources informed the committee’s work. Five formal com- mittee meetings and two public workshops were held during the course of the study. A community forum on adolescent health care revealed the views of both those who consume and those who provide adolescent health services so the committee could learn about adolescent and provider per- spectives, as well as organizational and contextual factors that diminish or enhance the delivery and quality of adolescent health services. A research workshop on adolescent health care services and systems highlighted the views of those who are familiar with current research on the organization and delivery of adolescent health services, as well as identified research needs and gaps in the literature base. The National Academies published a summary report of these two meetings in 2007. The committee also reviewed literature from a range of disciplines and sources. Data and research on adolescents, their families, and health prac- titioners who treat adolescents were analyzed. The committee considered research on various health services, the features of settings that serve ado- lescents, and the utilization of health services by adolescents. Public policies related to adolescent health, health services, health care provider training,

22 ADOLESCENT HEALTH SERVICES and financing were studied. Private-sector health funding mechanisms were reviewed. Additionally, the committee visited several institutions and organiza- tions focused on providing adolescent health services. The sites visited were chosen because they represent different institutional structures and service delivery locations, types, and models. The limited evaluation of these services and the lack of a standard against which to study them make it impossible to designate any of them as exemplary models of adolescent health care. However, these visits provided examples of health services be- ing delivered specifically to adolescents, and they helped the committee gain insight into various services, settings, financing arrangements, partnerships, approaches to coordination of care, and care models used in the United States to meet the health service needs of adolescents. A description of each site and what was learned from these visits is presented in Chapter 4. The sites visited were Denver Health, Denver, Colorado; Broadway Youth Center, Chicago, Illinois; Jetson Center for Youth, Baton Rouge, Louisiana; Arkansas Children’s Hospital, Little Rock; and Mt. Sinai Ado- lescent Health Center, New York City, New York. Each visit encompassed a tour of the program site or sites; meetings with leaders of the sponsoring institution to discuss institutional objectives and program operations, as well as reflections on successes, challenges, lessons learned, and research related to their efforts; and meetings with the institution’s various health practitioners to discuss the nature of the adolescents who receive services in their setting, the primary health issues being addressed, obstacles to service delivery, and clinical and program management issues. Meetings involved clinical leadership; key program staff (managers, relevant senior staff, and others identified by the site); clinical/agency partners; and health care pro- viders working with adolescents in the setting, such as physicians, nurses, counselors, and office assistants. The committee also made various efforts to understand the perspectives of adolescents on their health and their experiences with health services. During the site visits, the committee met with groups of adolescents to dis- cuss their perceptions of adolescent health issues and health service needs in their community and to gather first-hand accounts of experiences illustrat- ing how health programs have successfully reached out to this population. The adolescents were also encouraged to suggest ways in which adolescent health services in general could better serve their needs and those of their peers. As well, questions were posed in an online Harris Interactive poll of a nationally representative sample (in terms of geographic location, age, race/ethnicity, and socioeconomic status) of adolescents aged 10–18. (The results of this poll are described later in this chapter, and the list of ques- tions included in the poll is provided in Appendix B.)

SETTING THE STAGE 23 Challenges and Limitations The committee was challenged by the limited data and existing sci- entific literature in a number of key areas. There are no comprehensive national indicators of the health status of adolescents that place particular emphasis on behavioral and developmental health. Specifically, information is lacking by selected population characteristics (e.g., income, racial and ethnic status, geographic location) and other circumstances (e.g., LGBT, in the foster care system) that would provide longitudinal trends and enable comparison of the health behaviors of selected adolescent populations as they grow. Health services for adolescents are delivered in myriad settings and through varied institutional structures, and data on and evaluation of services are limited, thus making comprehensive assessment of the quality of service delivery, as well as comparison of different settings and services, a further challenge. Information on issues related to the adolescent health workforce, such as competency requirements for health professionals who work with adolescents, is also difficult to obtain. Finally, while there may be costs associated with the recommendations presented in this report, the committee did not address these economic implications. Such an analysis was beyond the scope of the study charge and the committee’s expertise. A future topic for research, therefore, is whether implementing the com- mittee’s recommendations would require additional resources or could be financed through reallocation of current investments. Study Scope The committee was charged broadly with an examination of adolescent health and health services. However, the charge did not specify what ages fall within the period of adolescence and what “health” should encompass. Therefore, one of the committee’s early tasks was to reach consensus on how to define these terms in reviewing the literature. Defining Adolescence The period of adolescence is influenced by social, cultural, economic, and physical elements, and the boundaries of this life phase are not precise. As a period in the life span, adolescence is a fairly new concept, recognized first at the beginning of the twentieth century. Psychologist G. Stanley Hall wrote a two-volume book in 1904 in which he described the nature of teens and argued that their specific developmental period required particular types of supports. The concept of adolescence became increasingly popular throughout the twentieth century as society changed its perspective on children. The view of children shifted from their being simply members of

24 ADOLESCENT HEALTH SERVICES a family during agrarian times (Hernandez, 1993) to their being economic assets working in factories during the period of industrialization (Zelizer, 1985). As the rate of industrialization decreased, the need for workers also decreased, and society began to become aware of the awful conditions to which child factory workers were subjected. As a result, numerous laws were passed at the end of the nineteenth century to protect children. Public education through mass schooling originated early in the twentieth cen- tury. These profound changes led to society’s view of adolescents as valued members of society with future intellectual and economic contributions to make, a view that has continued into the twenty-first century (Brown, 2001; Larson, Wilson, and Mortimer, 2003). Research on behavior and develop- ment during the adolescent period also emerged in the twentieth century, further highlighting the unique aspects of adolescence and the importance of health services and systems that would support the healthy development of adolescents into adulthood. Adolescence is characterized by profound changes at many levels— physical, social, emotional, and behavioral; it is also a time of transition between childhood and adulthood. Dramatic biological changes are asso- ciated with pubertal development: the body grows physically; adult facial appearance develops; and production of the hormones estrogen, proges- terone, and testosterone begins. These biological changes generally result in burgeoning sexual interest and may lead to health issues, such as the development of acne and weight loss or gain. For a variety of reasons, the period that delineates adolescence has expanded over time, starting earlier because of early pubertal development and lasting longer because of such factors as changes in employment and education and later ages at both marriage and childbearing (Arnett, 2006). Adolescence is also characterized by identity formation, with individu- als starting to make independent choices and experiment with new behavior and experiences. During this time, adolescents often select their peer group and decide for themselves how to spend time out of school. Peer group acceptance becomes increasingly important, and adolescents may focus on conforming to their peers and be susceptible to peer influence. For some adolescents, these decisions can result in rebellious, independent, thrill- seeking, and sometimes risky attitudes and behaviors (National Research Council and Institute of Medicine, 1999). For many adolescents, risk taking and experimentation are simply an important stage in their development, and when not taken to an extreme, do not result in problems. And of course some young people experience adolescence as a tranquil transition into adulthood. For others, however, these attitudes and behaviors can have negative impacts on health and development. Adolescents also often begin to make independent purchases that may affect their health. Among these purchases, food and beverages— particularly high-calorie and low-nutrient candy, carbonated soft drinks,

SETTING THE STAGE 25 and salty snacks—consistently dominate (Institute of Medicine, 2006). Once they reach age 18, adolescents also may be purchasing health care independently, with additional potential impacts on health. Research conducted in the last decade suggests that the brain is not completely developed until late in adolescence, and until that time, the connections between neurons affecting emotional, physical, and mental abilities are incomplete. Some adolescent behavior, such as inconsistency in controlling emotions, impulses, and judgments, may be attributable to this incomplete brain development, and much of that behavior is associated with unhealthful and risky adolescent activities (Dahl, 2003; Giedd et al., 1999; National Institute of Mental Health, 2001). The committee recognized that among health care providers, research- ers, and policy makers, different age brackets often demarcate the period of adolescence, ranging from as young as 10 to as old as 25. In most cases, those at the upper end of this age range are identified separately as “young adults” or “emerging adults.” Even within the U.S. government, several definitions are in use. Examples include the following: • U.S. Department of Health and Human Services (2007) (Healthy People 2010) – Adolescents (ages 10–19) – Young adults (ages 20–24) •  ubstance Abuse and Mental Health Services Administration (2007) S (National Survey on Drug Use and Health) – Youths (ages 12–17) – Young adults (ages 18–25) •  enters for Disease Control and Prevention (2006) (STD Surveillance) C – Adolescents (ages 10–19) – Young adults (ages 20–24) • U.S. Department of Justice (2006) (Criminal Victimization) – Age clustering: ages 12–15, 16–19, 20–24 •  outh Risk Behavior Survey (Centers for Disease Control and Pre- Y vention, 2007) – Young people (grades 9–12) • Society for Adolescent Medicine (1995) (position statement) – Adolescent medicine (ages 10–25) •  ational Longitudinal Study of Adolescent Health (Carolina Popu- N lation Center, 2007) – Adolescents (grades 7–12) •  ffice of Technology Assessment (OTA) (U.S. Congress and Office O of Technology Assessment, 1991) – Adolescents (ages 10–18) – Young adults (ages 18–26)

26 ADOLESCENT HEALTH SERVICES •  ational Initiative to Improve Adolescent Health (NIIAH 2010, or N the National Initiative) (National Adolescent Health Information Center, 2004) – Youth (ages 10–14) The committee reviewed these and other delineations of the period of adolescence, as well as literature on child and adolescent behavior and development, and examined health service needs, health service options, health financing issues, and issues regarding legal autonomy for those aged 10–24. This broad age range encompasses the most critical years of ado- lescent development, as well as the sometimes complex transitions from childhood to adolescence and from adolescence to adulthood. Ultimately, given the marked differences in health issues, developmental needs, health service needs, health financing issues, and legal status between adolescents and young adults, the committee found it difficult to address adequately the health service needs of such a broad age group. The committee also found that most evidence was limited regarding the health status, health services, and health service needs of those at the upper end of this age range. The committee therefore focused this report on adolescents aged 10–19. This age range allows the discussion to include the lower bound of puberty, as well as the age at which most adolescents embark on adult paths, such as college, employment, military service, or marriage. This target population is referred to throughout the report primarily by the term “adolescents,” but that term is sometimes used interchangeably with others, including “youths,” “young people,” and “teens” or “teenagers.” Where appropri- ate and possible, the committee broke the available data down into two subsets: early adolescence (ages 10–14) and adolescence (ages 15–19). In addition, some issues salient for those aged 18–19 do not apply to those aged 10–17 since the former are legally defined as adults; where relevant, this distinction is made. Having decided to focus this study on those aged 10–19, however, the committee faced a significant challenge arising from the variation in age ranges used to define adolescence among the various professional organi- zations, authorities (federal, state, and local), researchers, and advocacy groups that take an interest in, enact public policy for, and collect data and conduct research on adolescents. This variation made it impossible for the committee to rely exclusively on data and research on those aged 10–19. Throughout this report, therefore, the committee uses the best available evi- dence for adolescents aged 10–19, but notes that there are inconsistencies in the data and cases in which parallel data were not available. At times, more- over, the report refers to late adolescence or early adulthood (ages 20–24). For example, the health service needs of this older age group are included

SETTING THE STAGE 27 in the discussion of insurance coverage in Chapter 5 since the available evi- dence tends to distinguish between issues related to those aged 10–18 and those aged 19–24. Since the committee’s definition includes those aged 19, data on insurance eligibility and coverage for the full older age range are included to demonstrate the major transitions and striking shortcomings in access to health services that occur as adolescents grow older. The committee’s decision to focus on ages 10–19 was difficult and problematic. The lack of attention to the health and health service needs of older adolescents or emerging adults is a major concern that lies beyond the scope of this report, but one that the committee believes deserves careful attention in its own right in future studies. Selected Adolescent Subpopulations The range of subpopulations of adolescents in the United States results in broad variation among adolescents and their health status. The health and development and health service needs of adolescents vary by gender, race and ethnicity, social and economic environment, information and skills, and access to health services, as well as other factors. When pos- sible, the committee considered a variety of population variables and their relationship to adolescent health status and health services. In addition, the committee considered the specific issues and needs of adolescents in various circumstances, such as those who are in the foster care system, are homeless, are in families that have recently immigrated to the United States, identify themselves as LGBT, or are in the juvenile justice system. Data on the number of adolescents who fall into these subpopulations are sparse, and in many cases there is overlap among groups. Where possible, however, the committee attempted to quantify the numbers of adolescents in these specific groups. Finally, it is important to note that, while there is recognition in the literature and among experts that certain groups of adolescents have dif- fering needs, risks, and resources related to health, there is no agreement on the specific subpopulations within the adolescent population (Knopf et al., 2007). As will be discussed further in subsequent chapters, this lack of agreement creates challenges in addressing the unique health and health service needs of selected subpopulations and tailoring service delivery ac- cordingly. As well, much of the evidence on health status and health objec- tives for specific adolescent subpopulations is based on limited data and likely represents an underestimation of the challenges involved (Knopf et al., 2007).

28 ADOLESCENT HEALTH SERVICES Defining Health Beyond defining the adolescent population, the committee recognized the importance of defining adolescent health. A report of the NRC and the IOM defines children’s health as “the extent to which individual children or groups of children are able or enabled to (a) develop and realize their potential, (b) satisfy their needs, and (c) develop the capacities that allow them to interact successfully with their biological, physical, and social environments” (Na- tional Research Council and Institute of Medicine, 2004a, p. 4). The com- mittee further delineated three distinct but related domains of health: health conditions, which captures disorders or illnesses of body systems; function- ing, which focuses on the manifestation of health in an individual’s daily life; and health potential, which denotes the development of assets and positive aspects of health, such as competence, capacity, and developmental potential. The World Health Organization’s definition of health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity” (World Health Organization, 1948, p. 100) is consistent with the committee’s strong interest in looking broadly at health. The committee defined oral health as a part of physical health, and identified behavior as an element of health and well-being. The committee focused on the influence of health services and settings on adolescent health while also recognizing that a broad range of indi- vidual factors—biological (demographic, genetic, special needs), behavioral (sexual activity, diet, physical activity, use of weapons, substance use), attitudinal (values and personal preferences), social environmental (peers, schools, families), and immediate context or environment (neighborhood, media, geographic location, built environment)—all affect the health of adolescents. Health services, in turn, are affected by providers (training, types, and diversity), the overall system (funding, coverage and insurance, accessibility, acceptability, content and structure of care, service models, comprehensiveness of care, confidentiality, Medicaid, the State Children’s Health Insurance Program [SCHIP], school policies), and the overall socio- cultural environment (culture and values, income and inequality, the role of government, content and confidentiality, and political values). Within this web of influences, the committee’s specific focus was on health services and settings. The committee considered health services broadly, encompassing those services provided by doctors, nurses, mental health professional, dentists, or other health care providers. These services include health maintenance visits, school physicals, sports physicals, dental   Defined as clinical preventive services that incorporate screening, immunizations, and counseling about potential health problems and address prevention of future illness and in- jury; may also be called a well-care visit, a physical examination, a well-child examination, or ambulatory care.

SETTING THE STAGE 29 care, psychiatric care, and medical care when an adolescent is sick, injured, or managing a chronic condition. Health care can also occur in many differ- ent settings—a traditional medical or dental office, community-based health center, hospital or medical outpatient department, school, or pharmacy. NOTABLE PAST WORK Research and public policies aimed at better understanding and pro- moting adolescent health and health services served as an important starting point for this study. The most notable and comprehensive policy work to date on adolescent health is probably that conducted more than 15 years ago by the OTA. The OTA identified three major policy options for Congress that would demon- strate the nation’s commitment to a new approach to adolescent health is- sues and provide tangible, appreciable assistance to adolescents with health needs (U.S. Congress and Office of Technology Assessment, 1991): • Take steps to improve adolescents’ access to appropriate health and related services. • Take steps to restructure and invigorate the federal government’s efforts to improve adolescents’ health. • Support efforts to improve adolescents’ environments. The OTA report observed that there were numerous potential strate- gies for implementing each of these policy options. The overarching goal, however, would be to craft a health system that could move beyond the problem-specific services and health centers that characterized much of the delivery system for adolescent health services. The report concluded that federal and other policy makers should follow the basic guiding principle of providing a prolonged protective and appropriately supportive environment for adolescents. This effort should include a strategic vision of the ultimate purposes and features of a health system, as well as specific, concrete im- provements to a broad range of health and related services, policies, and care settings. Although leadership to implement these recommendations never emerged, they still serve as an important framework for thinking about adolescent health. More recently, the Health Resources and Services Administration’s Maternal and Child Health Bureau and the Centers for Disease Control and Prevention (CDC) within the U.S. Department of Health and Human Services launched the National Initiative to Improve Adolescent Health. The purpose of this initiative is to stimulate a wide array of public and private partnerships aimed at focusing on and improving the health, safety, and well-being of adolescents, young adults, and their families by increasing

30 ADOLESCENT HEALTH SERVICES access to quality health care and eliminating health disparities. A variety of health organizations are participating, including the Partners in Program Planning for Adolescent Health, the Association of Maternal and Child Health Programs, the National Assembly on School-Based Health Care, the National 4-H Council, the Children’s Safety Network, and the National Network of State Adolescent Health Coordinators, as well as academic centers at the University of Minnesota, Baylor College of Medicine, the Uni- versity of California, San Francisco, the University of Maryland, Indiana University, The Johns Hopkins University, the University of Alabama, Bos- ton Children’s Hospital, and the University of California, Los Angeles. The initiative takes a broad view of adolescent health, recognizing that healthful outcomes for adolescents involve more than access to health services. A number of other components—including behavioral strategies; counseling, support, and referral services; and safe, nurturing environments—are im- portant to healthy adolescent development and also help adolescents make healthful decisions. The National Academies has prepared several reports presenting conclusions about the health and well-being of adolescents and recom- mendations as to the types and features of settings that are successful in promoting adolescent health. Community Programs to Promote Youth Development (National Research Council and Institute of Medicine, 2002) provides a framework for thinking about adolescent development in the context of the various settings where adolescents live, learn, and work. Discussed in more detail in Chapter 4, this report identifies a set of personal and social assets that foster the healthy development and well- being of adolescents and facilitate a successful transition from childhood through adolescence and into adulthood. A comprehensive and interdisci- plinary synthesis of the literature conducted to inform this report revealed a specific set of characteristics—regardless of setting—that support the development of these assets in adolescents. These include such features as supportive relationships, appropriate program structure, safety, and opportunities for skill building. Various other reports of the National Academies provide insight into specific aspects of adolescent development and health. Reducing Underage Drinking (National Research Council and Institute of Medicine, 2004b) reviews the dangerous behavior of underage alcohol use and its association with traffic fatalities, violence, unsafe sexual activities, suicide, educational failure, and health risks. It offers recommendations for how this behavior can be prevented and for what individuals and groups can do to have an impact in promoting positive change to this end. Preventing Childhood Obesity: Health in the Balance (Institute of Medicine, 2005) looks specifically at the epidemic of obesity in children and adolescents. It explores the underlying causes of this serious health problem

SETTING THE STAGE 31 and the actions needed to initiate, support, and sustain the societal and life- style changes that can reverse the trend toward obesity among the nation’s children and adolescents. A follow-up to this report, Food Marketing to Children and Youth: Threat or Opportunity (Institute of Medicine, 2006), considers the specific impact of food and beverage marketing on the dietary patterns and health status of American children and adolescents and offers recommendations for how government agencies, educators and schools, health professionals, industry companies, industry trade groups, the media, and those involved in community and consumer advocacy can promote healthful food and beverage messages to children and adolescents. Preventing Teen Motor Crashes: Contributions from the Behavioral and Social Sciences (National Research Council, Institute of Medicine, and Transportation Research Board, 2007) explores the role of behavioral and social factors in teenage driving and considers prevention strategies to re- duce the burden of injury and death from teen motor vehicle crashes. The report identifies several key opportunities for applying research knowledge to teen driving practices, especially in such areas as coaching and novice driving practices, parental supervision, error detection, peer interactions, adolescent decision making, and the development of incentives to foster safe-driving skills. The social context of teen driving that influences cogni- tive development and the acquisition of driving expertise is identified as an important sphere that has received little attention in prevention strategies. Children’s Health, The Nation’s Wealth (National Research Council and Institute of Medicine, 2004a) reviews the information about children’s health that is needed by policy makers and program providers at the fed- eral, state, and local levels. This information can be used to assess both current conditions and possible future threats to children’s health, as well as to identify what is needed to expand the knowledge base on adolescent health. As a part of the IOM’s Quality of Health Care in America project, Crossing the Quality Chasm: A New Health System for the 21st Century (Institute of Medicine, 2001) examines the sizable gap between the quality of health services that exist in the United States and that which Americans should expect. The report documents the causes of this gap, identifies current practices that impede quality care, and explores how systemic ap- proaches can be used to implement change. It recommends a redesign of the American health system and identifies performance expectations for the system. The report is focused broadly on the U.S. population. The health service needs of adolescents, however, are relevant within several of the report’s priority areas, such as immunization, asthma, pregnancy and childbirth, mental illness, and obesity—specifically through the report’s focus on children with special needs and as an element of its system-level recommendations, such as those for coordination of care.

32 ADOLESCENT HEALTH SERVICES STUDY CONTEXT Adolescents in the United States In 2006 there were nearly 42 million adolescents aged 10–19 in the United States—14 percent of the total U.S. population. According to the U.S. Census Bureau (n.d., 2004, 2006b, 2007), the number of adolescents in the United States is expected to increase by 28 percent through 2050 (see Figure 1-1). Although this is a much smaller increase than that pro- jected for the overall population, it represents an additional 11.5 million adolescents. Finding: Adolescents aged 10–19 made up 14 percent (42 million) of the total population of the United States in 2006. Of the total adolescent population, 51.2 percent are male and 48.8 percent female. The majority of adolescents aged 10–19 are white (76 per- 70 Adolescent Population (Millions) 60 50 40 30 20 10 0 2000 2030 2040 2050 2020 1990 1980 2010 Year FIGURE 1-1  Growth in the adolescent population, aged 10 to 19, 1980–2006 and 2006–2050 (projected). SOURCE: U.S. Census Bureau (n.d., 2004, 2006b, 2007). Figure 1-1

SETTING THE STAGE 33 30 Adolescent Population (Millions) 25 White-NH 20 15 Hispanic 10 Black-NH 5 Asian-NH 0 AI/AN-NH 2000 2060 2030 2040 2050 2020 1990 2010 Year FIGURE 1-2  Changing racial/ethnic composition of the U.S. adolescent population, aged 10 to 19, 2000–2006 and 2006–2050 (projected). NOTE: AI/AN = American Indian/Alaskan Native; NH = non-Hispanic. SOURCE: U.S. Census Bureau (2006b, 2007). Figure 1-2 cent), including non-black Hispanics, followed by black/African American (16 percent), Asian (3.8 percent), two or more races (2.5 percent), Ameri- can Indian/Alaskan Native (1.2 percent), and Native Hawaiian and other Pacific Islander (less than 1 percent). Adolescents of Hispanic origin are also increasing in number. They currently make up approximately 18 percent of the U.S. adolescent population, but that figure is expected to increase to 30 percent by 2050 (compared with the white non-Hispanic population, expected to decrease from 60 to 47 percent) (see Figure 1-2) (U.S. Census Bureau, 2006b, 2007). In 2004, nearly 7 percent of adolescents aged 10–19 were foreign born; 85 percent of those foreign born are not U.S. citizens (U.S. Census Bureau, 2005). Finding: The racial and ethnic makeup of the U.S. adolescent popula- tion is becoming more diverse. The correlations among minority racial and ethnic status, poverty, and lack of access to quality health services for adolescents are strong. Without specific attention and actions to reduce them, disparities in access to quality health services among mi- nority racial and ethnic groups may increase. There is a correlation between poverty and the lack of access to quality health services for adolescents (Agency for Healthcare Research and Quality

34 ADOLESCENT HEALTH SERVICES and Health Resources and Services Administration, 2000; Reading, 1997; Stevens et al., 2006; Zeni et al., 2007). This fact is particularly distressing when viewed in light of the most recent data related to adolescents living in poverty. In 2005, the U.S. Census Bureau reported that 17.6 percent of adolescents under age 18 were living in poverty. Black and Hispanic ado- lescents under age 18 experience poverty at a higher rate than their Asian and white non-Hispanic counterparts. This is a consistent trend seen since 1980 (see Figure 1-3) (DeNavas-Walt, Proctor, and Hill Lee, 2006). Where adolescents live and with whom may also directly affect health status, health-related behavior, health needs, and health services because of the potential impact of these variables on financial stability and stress level. In 2006, 35 percent of those aged 9–17 lived either in one-parent households or in households where no parent was present (U.S. Census Bureau, 2006a). Access to quality health services may be a particular challenge in rural areas (Gamm, Hutchison, and Bellamy, 2002), which have fewer health ser- vices within a reasonable distance of where people live. Of U.S. adolescents aged 12–17, 19 percent, or 4.6 million, live in rural areas (nonmetropolitan counties including no city with a population of greater than 10,000) (Fields, 70 60 50 Percentage 40 Black 30 Hispanic 20 All Races 10 Asian White-NH 0 2000 2006 2004 2002 1990 1996 1980 1984 1986 1988 1998 1994 1992 1982 Year FIGURE 1-3  Percentage of adolescents under age 18 in poverty by race/ethnicity, 1980–2006. NOTES: Poverty is defined by the U.S. Census Bureau using the Office of Manage- Figure 1-3 ment and Budget’s Statistical Policy Directive 14. NH = non-Hispanic. SOURCE: DeNavas-Walt, Proctor, and Hill Lee (2006).

SETTING THE STAGE 35 2003). The population of rural adolescents increased from 1990 to 2002 (U.S. Census Bureau, 1992, 2003). A portion of the adolescent population is disconnected from basic opportunities and supports that provide for their health, well-being, and economic self-sufficiency. These adolescents include those who are home- less, are transitioning from foster care, are recent immigrants to the United States, and are involved in the juvenile justice system. Of the U.S. population under age 18, 0.5 percent live in group quarters— either institutionalized (e.g., correctional institutions, nursing homes, hospi- tal wards and hospices for the chronically ill, mental [psychiatric] hospitals or wards, juvenile institutions, other institutions) or noninstitutionalized (e.g., college dormitories; military quarters; other noninstitutionalized group quarters, such as group homes and shelter facilities). Correctional and juvenile facilities are the two leading group quarters for both male and female adolescents under age 18 living in institutions. There are twice as many adolescent males as females living in institutions (U.S. Census Bureau, 2000). While this factor is important, it is notable that, according to the National Survey of Child Health, family income and mother’s own health status are more likely to be correlated with adolescent health status than is place of residence (Maternal and Child Health Bureau, 2005a,b). Data on runaway and homeless adolescents are difficult to capture given this population’s inclination to be invisible or difficult to find. The National Runaway Switchboard collects data on calls to its crisis line. In 2006, it handled 113,916 calls from adolescents aged 12–21, 76 percent of whom were female (National Runaway Switchboard, 2006). These adoles- cents are frequently in a precarious living situation as a result of their being involved in systems of care such as the foster care or juvenile justice system, or their being recent immigrants to the United States or being disenfran- chised socially, as may be the case for LGBT adolescents. They generally lack primary health care and may have increased health problems because of either factors that influenced their being homeless or the increased risk and exposure that result from living on the street (Shapiro, 2006). How adolescents use their time may also affect their health, both positively and negatively. Adolescents who have a substantial amount of unsupervised time during nonschool hours may be at risk of participating in health-damaging behavior (National Research Council and Institute of Medicine, 2002); there is evidence that these adolescents are more likely to engage in sexual activity, smoke, use alcohol and drugs, and participate in violent and gang-related activities (Zill, Nord, and Loomis, 1995). More- over, involvement with electronic media leads to increased sedentary time and less active playing (Institute of Medicine, 2005), which may contribute to obesity. Besides work time (4 to 6 hours a day), which includes school- work, household labor, and paid labor, adolescents in the United States

36 ADOLESCENT HEALTH SERVICES have 6.5 to 8 hours of free time a day, much of which is unstructured discre- tionary time (Larson, 2001; Larson and Verma, 1999). A great deal of this discretionary time is spent watching television, playing video games, using computers, and engaging with other electronic media (Rideout, Vandewater, and Wartella, 2003; Roberts et al., 1999). Multiple televisions, radios, tape players, video cassette and DVD players, video game players, and comput- ers are common in American homes (Rideout, Vandewater, and Wartella, 2003). Fully 70 percent of adolescents aged 10–17 have access to the Inter- net at home (Cheeseman Day, Janus, and Davis, 2005), and yet there is no evidence to help understand the extent to which adolescents have access to electronic communication with their health care providers. Adolescent Health and Health Services The past century of medical advances in research and treatment has im- proved the understanding of physical and hormonal changes, psychological development, and risk-taking behavior that define puberty and the major psychological, cognitive, and behavioral developments that characterize the transition from childhood to adulthood. Historically, the medical care of adolescents was subsumed under the disciplines of pediatrics, psychiatry, internal medicine, and gynecology, but none of these focused exclusively on adolescents. During this century—likely as a response to the rapidly expanding adolescent population; increases in adolescent morbidity and mortality; advances in understanding of adolescent physical, emotional, and cognitive development; and societal influences that have made the adoles- cent environment less restrictive—the subspecialty of adolescent medicine has emerged (Alderman, Rieder, and Cohen, 2003). In 1941 the American Academy of Pediatrics held a symposium on adolescence, a first effort to incorporate adolescent medicine into the do- main of pediatric practice. This was followed by the development of a few medical school academic divisions focused on adolescents. Ten years later, J. Roswell Gallagher, often credited as the founder of adolescent medicine, began the first inpatient adolescent health unit at Boston Children’s Hospi- tal. Early in his career he worked as a school physician, studying adolescent growth and development, and ultimately helping to highlight the need for health services that included comprehensive preventive services, as well as diagnosis and treatment of physical health and “mental hygiene” or emo- tional health issues (Prescott, 1998). Since the 1960s, several important developments have further improved the knowledge base on and drawn attention to adolescent health and health services. Adolescent medicine training programs funded by the federal government, the Society of Adolescent Medicine, the American Academy of Pediatrics’ Committee on Adolescence, and various other organizations

SETTING THE STAGE 37 with a primary focus on adolescents have made important contributions to research, training, and the formulation of policies focused on adolescent health and health services. In addition to the development of a better understanding of how to treat and cure medical illnesses, adolescent health care has examined the effects of high-risk adolescent behavior and investigated strategies for re- ducing such risks and limiting their impact. There has also been a move- ment toward promoting healthy adolescent development rather than simply preventing adolescent problems. In addition to adolescent medical specialists, a broad range of medi- cal practitioners continue to provide health services to adolescents. They include pediatricians, family physicians, and dentists, with the involvement of such subspecialty fields as gynecology, infectious diseases, sports medi- cine, psychology, and endocrinology. As well, the settings where adolescent health services are delivered have evolved from doctors’ offices to commu- nity and specialized clinics, school-based health centers, and mobile vans. These multiple entry points into the system of care offer both opportunities and challenges. Perceptions and Attitudes About Adolescent Health Many people and groups—adolescents, their parents, other adults, and the various practitioners who deliver health services—have perceptions about adolescent health status and behavior and perspectives on appropri- ate and needed adolescent health services. Understanding the perceptions and attitudes of these many stakeholders is important to the successful development of adolescent health policies and services that are well sup- ported by the public and respond appropriately to the needs and interests of those who are served. As well, those engaged in adolescent health (ado- lescent themselves, parents, health practitioners, schools) face complex and sometimes controversial issues with regard to the right to and importance of confidentiality of care. Chapter 4 includes a full discussion of these issues. Adolescents sometimes appear to be a difficult group for the public to embrace. They may also be blamed for the health conditions that result from such behavior as drug and alcohol use, risky sexual conduct, and risky driving. Moreover, negative attitudes may be more intense toward certain subpopulations of adolescents, such as those who are homeless, LGBT, or in the juvenile justice system. And, the public often perceives these ado- lescents as someone else’s problem—a problem for which the government should not have to take responsibility or on which their tax dollars should not be spent. There is a limited literature of varying quality and significance on perceptions and attitudes regarding adolescent health and health services,

38 ADOLESCENT HEALTH SERVICES and much of that work is based on surveys. Nonetheless, the committee selected some examples that highlight adolescent, parent, and practitioner perspectives. Adolescents It is important for the design and delivery of adolescent health services to appeal to adolescents and be responsive to their needs and concerns. In that spirit, the committee included questions in an online Harris Interactive poll aimed at understanding the health perspectives and interests of adoles- cents themselves. Nearly 1,200 adolescents responded to questions about their access to medical services, barriers to receiving care, communication about health services, the extent to which their parents or other adults or peers are involved in helping them obtain health services, their interest in using technology for health information and health reminders, and their perspective on how health services could be more helpful to them. Respon- dents reported that their parents are quite often involved in their health care and that they view this involvement positively. The majority of respondents indicated that they experience no access barriers to health services. When barriers were reported, cost and scheduling were cited most frequently, along with a lack of insurance. Respondents frequently mentioned having access to affordable, convenient, and high-quality dental care as what they would most like to change about health services to make them more help- ful. Although confidentiality appeared to be of low concern, 10 percent of respondents worry that their parents will learn information they do not want their parents to have. (Privacy and confidentiality issues are discussed further below.) About 20 percent of respondents are extremely or very interested in using technology (e.g., mobile phones, the Internet) to obtain health information. Differences in adolescent perspectives may be attributable to certain demographic variables. Family values and structures, for instance, may play a role in the health behavior and attitudes of adolescents. A study of urban adolescent males found that family circumstances influenced attitudes to- ward sexual behavior. Young male adolescents who were raised by a single parent with no father present or had a mother who was a teenage parent reported little concern about sexual responsibility. By contrast, urban ado- lescent males with two parents in the home or father-figure relationships expressed concern about their sexual health and the possibility of becoming a teenage father (Gohel, Diamond, and Chambers, 1997). Gender may also have an impact on adolescent perspectives. In a study conducted by Pleck and O’Donnell (2001), male adolescents reported more risky health behavior than did female adolescents. Another study found that while 87 percent of healthy adolescents were satisfied with the general

SETTING THE STAGE 39 health services they received, 13 percent were dissatisfied because of the gender of the provider, embarrassment, or an uncomfortable atmosphere in the provider’s office (Jacobson et al., 2000). Some limited work has been done to collect data on the perspectives of adolescents regarding mental health services (Garland and Besinger, 1996; Shapiro, Welker, and Jacobson, 1997). More commonly, however, parents are surveyed about their satisfaction with their children’s services (Magura and Moses, 1984). In a study of adolescents in foster care conducted by Lee and colleagues (2006), adolescents were asked to share their experi- ences with mental health services and specific providers, with the goal of identifying and describing the characteristics they valued in relationships with mental health professionals and the services they received. The rela- tionship with their provider, the professionalism of the provider, and the effects of the treatment were the areas the adolescents identified as critical to receiving quality care. Adolescents using drugs do not typically perceive a need for or seek treatment for substance abuse. In the National Survey on Drug Use and Health (Substance Abuse and Mental Health Services Administration 2003– 2004), among those who were classified as needing such treatment but had received none in the past year, only 2.2 percent perceived a need for treat- ment for alcohol use problems and only 3.5 percent for drug use problems (note that the criminal justice system is a major source of referral for such treatment). According to data from the Treatment Episode Data Set (Sub- stance Abuse and Mental Health Services Administration, 2006), in 2004 the criminal justice system accounted for 52 percent of referrals for those aged 12–17, 52 percent for those aged 18–21, and 45 percent for those aged 22–25. In the Cannabis Youth Treatment Study, 80 percent of ado- lescents saw no need for treatment. Those who viewed treatment as most relevant, who liked their therapist, who felt comfortable discussing their problems with their therapist, and who perceived fewer practical obstacles to treatment attended more drug abuse treatment sessions (Mensinger et al., 2006). Another study found that adolescents who experienced more negative consequences from their substance use showed more motivation to change (Battjes et al., 2003; Breda and Heflinger, 2004). Parents Parents’ perspectives on adolescent health status and behavior fre- quently differ from those of adolescents. For instance, in a 2006 Phillip Morris Teenage Attitudes and Behavior Survey, fewer than half of adoles- cent smokers aged 11–14 reported that their parents were aware that they smoked (Phillip Morris USA, 2006). Similarly, according to the National Survey of Child Health, 83 percent of parents believed their adolescent chil-

40 ADOLESCENT HEALTH SERVICES dren (aged 12–17) were in excellent or very good health. Yet the definition of good health may vary tremendously among parents, in some cases being based on traditional medical measures and in others simply on the absence of a noticeable illness. Sexual behavior and reproductive health is an area that elicits par- ticularly strong opinions, and one in which parents’ perceptions of behav- ior and reports of behavior by adolescents are often inconsistent. Many parents underestimate the number of adolescents who are sexually active (Hutchinson et al., 2003; Miller and Whitaker, 2000). A national survey conducted by the Society for Adolescent Medicine in 2004 found that while 60 percent of parents were concerned about the consequences of adolescent sexual activity, 84 percent of these parents did not believe their own child was sexually active (Society for Adolescent Medicine, 2004). According to CDC, however, nearly half of adolescents in grades 9–12 have had sex (Grunbaum et al., 2004). Similarly, a study by the National Campaign to Prevent Teen Pregnancy revealed that two-thirds of parents of sexually ac- tive 14-year-olds had no idea their children were having sex (Albert, Brown, and Flanigan, 2003). Moreover, while parents value the information they receive from health practitioners about their children’s health, practitioners believe parents often misunderstand the benefits of sex education versus the costs of irresponsible sexual behavior (Deptula et al., 2006). For ex- ample, parents may not want their children to receive information about the human papillomavirus vaccine or methods of birth control because they believe this will promote early sexual activity or are opposed on religious grounds (Zimet, 2005). In fact, it is now clear that comprehensive sex edu- cation does not hasten the onset of sexual activity at all (Kirby, 2007). There may also be differences in adolescent perspectives among racial and ethnic groups. A study of adults in rural North Carolina found that black parents were more than 50 percent more likely than white parents to believe that public schools should provide adolescents with general health services, including pregnancy testing and treatment of sexually transmit- ted diseases. However, they were only half as likely to approve of sexual experimentation by adolescents (Horner et al., 1994). Practitioners Health practitioners believe more work is needed to ensure that ado- lescents and their parents are aware of the health services available to them in the community and that health care providers have a positive approach to adolescent health services (Burack, 2000). At the same time, some pro- viders believe adolescents are best served at medical clinics focused on specific health needs, such as mental health, substance abuse treatment,

SETTING THE STAGE 41 healthy eating/obesity, injuries/orthopedics, sexual behavior and reproduc- tive health, and safety/domestic issues (McDonagh et al., 2006). Some health care providers (physicians, nurses, nurse practitioners) lack confidence that they have the training needed to provide the best health services to adolescents. Fewer than half of providers who care for adolescents on a regular basis have received formal training in doing so (Burack, 2000). Communication between health care providers and adolescents is also important. In one study, 43 percent of physicians reported that they did not believe adolescents would tell the truth about their sexual activity. This was the case even though the physicians indicated that they had discussed sexual health needs, sex education, and/or birth control and condoms with nearly 75 percent of their patients (Igra and Millstein, 1994). Many health care providers fail to realize that the health concerns of adolescents can vary greatly by gender and are much more diverse than might be expected, with social and psychological concerns being just as important as traditional medical concerns. Without rigorous and diligent inquiry on the part of providers regarding social and emotional as well as physical issues, adolescents may not reveal important information that relates to their total well-being (Kowpak, 1991). Pharmacists have an important role in assessing, initiating, monitor- ing, and modifying medications, one that often leads to interactions with patients and creates opportunities to assist in providing adolescent health services. In a survey of close to 1,000 pharmacists, however, a substantial portion reported inadequate training in issues related to adolescent health (Conard et al., 2003). Many of the pharmacists expressed interest in gain- ing a better understanding of these issues, which could improve their inter- actions with adolescent patients. Given the important role of pharmacists as an integral part of a health care team, Conard and colleagues (2003) suggest that the role of pharmacists in adolescent health receive increased attention during pharmacy training and in postgraduate forums. Policy Environment Whether adolescents receive quality health services, preventive health services, and supportive counseling is affected by the policy environment in which the need for and cost of these services are debated. There is dis- agreement among policy makers on whether there should be universal ac- cess to health services in the United States. There is also no agreement on the appropriate role of government-supported health services versus those that should be financed by private health insurance. The result has been a haphazard system for providing these services for adolescents, as well as other children and adults. With much of the ultimate determination of the

42 ADOLESCENT HEALTH SERVICES quality and extent of care being left to the states, and with federal and state funding for health services frequently being limited, many adolescents fall through the cracks of the health system. This situation is exacerbated by the fact that there is no national policy consensus in the United States on how to deal with adolescents except with regard to education. The operation of Medicaid and SCHIP provides an example of this problem. These programs provide health coverage that, in theory, should be adequate for children and adolescents. In reality, however, both pro- grams have flaws that result in many adolescents being covered not at all or inadequately as states adjust eligibility, the extent of service provision, and the requirements for copayments that adolescents and their families may not be able to afford. he federal government has focused on private T health care and insurance that covers care for more vulnerable populations not currently served by Medicaid or SCHIP, and has therefore encouraged changes to the tax code to make private insurance affordable and state ac- tion to monitor the adequacy of coverage. As a result, a variety of proposals for the reform of state health insurance have surfaced that are currently being considered to increase health insurance coverage for children and adolescents. Privacy and Confidentiality Beyond attitudes and perceptions about adolescent health and health services, legal considerations of confidentiality and informed consent are central to any discussion of the interests and rights of adolescents with re- spect to their health. These matters are ethically and legally complex, and a great deal is at stake in these discussions. Although the ethical and legal complexities involved have the potential to divide health care providers, parents, policy makers, and advocates for children and for families, there is also significant potential for defining common ground. Some parents may believe that their authority and their ability to shape their children’s lives and values (Wisconsin v. Yoder [1972], 406 U.S. 205, 234)—moral, religious, and spiritual—are threatened by the notion that adolescents themselves have independent interests and rights. Most parents, however, are concerned primarily with promoting their adolescent chil- dren’s health, safety, and well-being. In that context, it can be challenging for parents to understand when and why it is appropriate for adolescents to be able to consent to their own health services and receive those services on a confidential basis, and how those interests may differ from their own. Many adolescents perceive that they are engaged in a process of self-   See http://www.plannedparenthood.org/.   See http:///www.afa.net/prolife/articles.asp.

SETTING THE STAGE 43 definition and individuation that requires—to a greater or lesser degree— the creation of a private persona with desires and behavior that, even if not forbidden by parents, are separate from parental scrutiny and supervision. For a few young people, adolescence can lead to a significant disjunction of interests that may even threaten the integrity of the family. In some families, the impetus for this disjunction comes from the adolescent, while in others the parents are motivated by their own problems or their children’s behav- ior to initiate a break. Even so, the majority of adolescents obtain health services with the knowledge and support of their parents and benefit from that involvement. Health professionals, both by inclination and by training, focus on the needs of their patients. For this reason, providers of health services to adolescents often view themselves as allies of the adolescent who is seeking to define a separate existence and decision-making structure. At the same time, adolescent health experts in clinical settings, research institutions, and professional organizations have repeatedly recognized the important role of parents in fostering the health of adolescents. It is critical that these challenging issues be addressed within a cur- rent social and policy context in which there is little overt support for the adolescent experimentation and risk taking that may give rise to the need for confidentiality protection in adolescent health services. Even so, a large body of evidence, drawn from research conducted over the past several decades, serves not only to document the range and extent of behavior that affects adolescents’ health, but also to provide a rationale and strong justification for protecting confidentiality in their health services. BEHAVIORAL AND CONTEXTUAL CHARACTERISTICS Creating successful interactions between adolescents and health service settings and systems requires a multifaceted approach. The committee was guided by two frameworks in its data collection, review of the evidence, and attention to various dimensions of adolescent health status and health services. The first focuses on behavioral and contextual characteristics that influence how adolescents interact with the health system. The second, which is described in Chapter 3, focuses on the objectives of adolescent health services. Neither framework alone is sufficient to explain significant variations in adolescent health outcomes; rather, they complement each other and, in tandem, provide a more complete picture of the features of the health system that should be improved in order to provide adolescents high-quality care and thus help to improve their health status. The committee recognized that certain sets of behavioral and con- textual characteristics shape the ways in which adolescents approach and interact with health care services, providers, and settings. When these

44 ADOLESCENT HEALTH SERVICES characteristics are addressed in the design of health services for adolescents, these services can offer high-quality care that is particularly attuned to the needs of this age group. These characteristics helped frame the chapters of this report and, where relevant and supported by the evidence, are reflected in the committee recommendations. • Development matters. Adolescence is a period of significant and dramatic change spanning the physical, biological, social, and psy- chological transitions from childhood to young adulthood. This dynamic state influences both the health of young people and the health services they require (Chapter 1). • Timing matters. Adolescence is a critical time for health promotion. Many health problems and much of the risky behavior that under- lies later health problems begin during adolescence. Prevention, early intervention, and timely treatment improve health status for adolescents and prepare them for healthy adulthood; such services also decrease the incidence of many chronic diseases in adulthood (Chapter 2). • Context matters. Social context and such factors as income, ge- ography, and cultural norms and values can profoundly affect the health of adolescents and the health services they receive (Chapters 2 and 3). • Need matters. Some segments of the adolescent population, defined by both biology and behavior, have health needs that require par- ticular attention in health systems (Chapter 2). • Participation matters. Effective health services for young people in- vite adolescents and their families to engage with clinicians (Chap- ter 4). • Family matters. At the same time that adolescents are growing in their autonomy, families continue to affect adolescents’ health and overall well-being and to influence what health services they use. Young people without adequate family support are particularly vulnerable to risky behavior and poor health and therefore often require additional support in health service settings (Chapter 4). • Community matters. Good health services for adolescents include population-focused as well as individual and family services since the environment in which adolescents live, as well as the supports they receive in the community, are important (Chapter 4). • Skill matters. Young people are best served by providers who un- derstand the key developmental features, health issues, and overall social environment of adolescents (Chapter 5). • Money matters. The availability, nature, and content of health ser- vices for adolescents are affected by such financial factors as public

SETTING THE STAGE 45 and private health care insurance, the amount of funding invested in special programs for adolescents, and the support available for adequate training programs for providers of adolescent health ser- vices (Chapter 6). • Policy matters. Policies, both public and private, can have a pro- found effect on adolescent health services. Carefully crafted policies are a foundation for strong systems of care that meet a wide variety of individual and community needs (Chapter 6). ORGANiZATION OF THE REPORT This report reviews the literature on adolescent health and health service delivery; presents the committee’s findings; and offers recommenda- tions directed to both public and private entities, for investing in, strength- ening, and improving the system of health services for adolescents. Chapter 2 reviews the health status of adolescents, while Chapter 3 describes the health services, settings, and providers currently available for adolescents. Chapter 4 identifies strategies for improving current health services to achieve a system that would reflect the needs and concerns of the adoles- cent population more accurately. Chapter 5 describes the training require- ments and needs of health care providers who serve adolescents. Chapter 6 describes adolescent health insurance coverage and associated challenges in accessing health services. Finally, Chapter 7 highlights the committee’s task, summarizes the committee’s overall conclusions related to this task, and presents the committee’s recommendations. In addition, for reference throughout the report, a list of acronyms is provided in Appendix A. The questions on the online Harris Interactive Omnibus Survey used for this study are listed in Appendix B, and Appendix C contains biographical sketches of the committee members. REFERENCES Agency for Healthcare Research and Quality. (2006). Medical Expenditure Panel Survey: Table 1. Health insurance coverage of the civilian noninstitutionalized population: Per- cent by type of coverage and selected population characteristics, United States, first half of 2006. Available: http://www.meps.ahrq.gov/mepsweb/data_stats/quick_tables_results. jsp?component=1&subcomponent=0&year=2006&tableSeries=4&searchText=&search Method=1&Action=Search [December 6, 2007]. Agency for Healthcare Research and Quality and Health Resources and Services Administra- tion (2000). Access to Quality Health Services. Healthy People 2010, Volume I (second edition). Objectives for Improving Health (Part A: Focus Areas 1-14), 1–47. Avail- able: http://www.healthypeople.gov/Document/pdf/Volume1/01Access.pdf [January 22, 2008].

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Adolescence is a time of major transition, however, health care services in the United States today are not designed to help young people develop healthy routines, behaviors, and relationships that they can carry into their adult lives. While most adolescents at this stage of life are thriving, many of them have difficulty gaining access to necessary services; other engage in risky behaviors that can jeopardize their health during these formative years and also contribute to poor health outcomes in adulthood. Missed opportunities for disease prevention and health promotion are two major problematic features of our nation's health services system for adolescents.

Recognizing that health care providers play an important role in fostering healthy behaviors among adolescents, Adolescent Health Services examines the health status of adolescents and reviews the separate and uncoordinated programs and services delivered in multiple public and private health care settings. The book provides guidance to administrators in public and private health care agencies, health care workers, guidance counselors, parents, school administrators, and policy makers on investing in, strengthening, and improving an integrated health system for adolescents.

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