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Adolescent Health Services: Missing Opportunities (2009)

Chapter: 4 Improving Systems of Adolescent Health Services

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Suggested Citation:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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:"4 Improving Systems of Adolescent Health Services." 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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4 Improving Systems of Adolescent Health Services Summary Developing improved health systems for adolescents will require at- tention to several fundamental goals: • Emphasize the capacity of primary health care services to provide high-quality screening, assessment, health management, referral, and care management of specialty services, especially for behav- iorally based health problems. • Coordinate behavioral, reproductive, mental health, and dental services in practice and community settings. • Incorporate health promotion, disease prevention, and youth devel- opment throughout the health system and within the community. • Focus attention on the health and health service needs of those adolescents who are most vulnerable to risky behavior and poor health. • Ensure consent and confidentiality for adolescents seeking care. C hapter 3 described the current array of primary and specialty care health services for adolescents, with a particular emphasis on re- viewing the evidence on the gaps and shortcomings in the accessibil- ity, acceptability, appropriateness, effectiveness, and equity of these services. The evidence presented underscores the importance of adolescent health 194

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 195 services that meet these quality objectives; the scarcity of current services that consistently do so; and the lack of systems that provide coordinated health promotion, disease prevention, and behavioral health services for adolescents. Whereas Chapter 3 focused primarily on findings with respect to problems with adolescent health services, this chapter focuses on ways to address these problems and achieve improved adolescent health systems that embody the above quality objectives. The strategies recommended are informed by three of the behavioral and contextual characteristics presented in Chapter 1. First, participation matters: effective health services for young people invite engagement with clinicians by adolescents and their families. Second, family matters: at the same time that adolescents are growing in their autonomy, families continue to affect their 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 thus require additional support in health service settings. Third, community matters: good health services for adolescents include population-focused as well as individual and family services since the en- vironment that adolescents live in as well as the supports provided in the community are important. Efforts to improve the availability of health services for adolescents and the accessibility of those services are insufficient by themselves to meet the health needs of today’s adolescents. Those needs increasingly involve health problems resulting from behaviors that can best be addressed before the onset of obvious morbidity or during the early stages of experimentation in such areas as diet and exercise, substance use (including tobacco and alcohol), driving, and sexual behavior. Therefore, adolescent health services need to do a better job of incorporating prevention and health promotion, while also being more tailored to the developmental stage of adolescents. Evidence is insufficient to suggest that one particular setting or practice structure for adolescents can achieve significantly better outcomes than other approaches. While a small number of comprehensive clinics and facilities focused on adolescents do exist, these service approaches are not easily applied to larger populations or most communities because of a lack of professionals specializing in adolescent health. However, the five criteria of accessibility, acceptability, appropriateness, effectiveness, and equity pro- vided the committee with a framework for assessing the use, adequacy, and quality of adolescent health services, and comparing and contrasting the extent to which different services, settings, and providers meet the health needs of adolescents in the United States. To meet these needs, improved systems of adolescent health services will be necessary. These systems must encompass (1) evidence-based and standardized screening tools and management and referral processes in adolescent-friendly primary care settings, including primary care provider

196 ADOLESCENT HEALTH SERVICES offices, community-based health centers, hospital-affiliated primary care services, and school-based health centers; (2) facilitated linkages between providers of primary and specialty care services, especially for specific sub- populations of more vulnerable adolescents; and (3) expanded connections between primary care settings and community agencies providing health promotion, disease prevention, behavioral health, and youth development services that are delivered by health professionals with appropriate training in adolescent medicine. In short, it will be necessary to modify the structure and design of primary care (including safety-net services), specialty care (including mental health, sexual and reproductive health, oral health, and substance abuse treatment and prevention services), organizational arrange- ments, workforce development, and financial systems so that adolescent health services can place greater emphasis on health promotion, disease prevention, and youth development. The latter three emphases are particu- larly lacking for the most underserved and high-risk groups of adolescents, such as those who are poor; are members of a racial or ethnic minority; are in the foster care system; are homeless; are in families that have recently immigrated to the United States; are lesbian, gay, bisexual, or transgender; or are in the juvenile justice system. This chapter describes elements of adolescent health services that can best meet the needs of all adolescents. It emphasizes the importance of in- tegrating efforts to identify and address risky behavior with interventions aimed at health promotion, disease prevention, and youth development in settings that serve adolescents. The first section identifies selected features of health services (including screening, assessment, health management, referral, and care management of specialty services) that, when incorpo- rated into primary care services, may enable those services to better address unhealthful habits and risky behaviors of adolescents. Next is a discussion of strategies that can be used for enhanced coordination of primary care services with more specialized behavioral, nutritional, oral, and sexual and reproductive health services. The third section examines strategies for fos- tering health promotion, disease prevention, and youth development, with the goal of improving the health of all adolescents. This section also consid- ers how public health objectives for adolescents (the 21 critical objectives within the broader set of Healthy People 2010 goals and the Healthy People 2010 adolescent oral health objectives) can be linked to the health system for adolescents through a population-based approach (U.S. Department of Health and Human Services, 2000, 2007). The ultimate goal is to identify strategies that can foster service integration and coordination across public and private health systems so the two sectors can complement each other in addressing the health needs of today’s adolescents, strengthen adolescents’ capacity to become healthy and productive adults, and ultimately achieve the objectives for adolescents of Healthy People 2010. The fourth section

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 197 reviews the roles and responsibilities of various stakeholders in ensuring adolescents’ access to confidential health services. This is followed by a discussion of innovations in adolescent health services, including the in- creasing use of health information technology, as well as some examples of current efforts to deliver health services to this population through a variety of approaches. IDENTIFYING AND ADDRESSING UNHEALTHFUL HABITS AND RISKY BEHAVIORS AMONG ADOLESCENTS As reviewed in Chapter 2, unhealthful habits and risky behaviors that are initiated during adolescence extend into adulthood and contribute directly to poor health conditions and significant morbidity and mortal- ity in the short and long terms (Kolbe, Kann, and Collins, 1993). Health systems can play a critical role in the early identification, management, and monitoring of adolescents who are already experimenting with unhealthful habits and risky behaviors or associating with peers who do so. Systematic efforts to identify and respond appropriately to these behaviors can delay their onset or reduce their severity and duration, as well as prevent the initiation of other, co-occurring behaviors, such as use of alcohol, drugs, and tobacco products; unprotected sex; violence; and hazardous driving. Designing interventions to address unhealthful habits and risky behaviors requires attention to several key components of primary care: screening, assessment, health management, referral, and care management of spe- cialty services. Each of these components is discussed below, with a focus on selected research findings that may influence the development of more effective health services for adolescents. Screening As discussed in Chapter 3, screening and counseling are critical for adolescents, since unhealthful and risky behaviors are the leading cause of morbidity and mortality among individuals in this age group and also affect their future health status as adults. A general physician inquiry, the screening method most frequently relied upon by health care practitioners, frequently falls short in screening for unhealthful habits and risky behav- iors. An alternative to a general physician inquiry is the use of standardized screening tools. Such tools, however, are used infrequently in primary care settings for adolescents (Gardner et al., 2003). Those that are used often focus on only a single risky behavior, such as sexual practices or substance use (McPherson and Hersch, 2000), so that clinicians must administer several screens to have a comprehensive battery. Internal factors, such as physician attitudes or inadequate training of personnel who must adminis-

198 ADOLESCENT HEALTH SERVICES ter the screens, and external factors, such as cost, time, inadequate referral resources, and a lack of guidance on the use of the tools, may be an addi- tional barrier to their use (Horwitz et al., 2007; Ozer et al., 2005). Several national organizations, including the American Medical Asso- ciation (AMA) and the American Academy of Pediatrics (AAP), recommend that, at a minimum, all adolescents receive routine structured screening for a variety of behavioral and health risks as part of the annual health main- tenance visit (Elster and Kuznets, 1994; Green and Palfrey, 2002). Not only do such tools increase the identification of targeted behaviors or symptoms, but they also may minimize disparities in care by increasing standardization of practice (Miranda et al., 2003). Numerous regulatory and advisory bod- ies are in general agreement on criteria for the use of standardized screening tools (Calonge, 2001; Feightner and Lawrence, 2001). These criteria in- clude the availability of practical, sensitive, and specific instruments; a high prevalence of morbidity or mortality associated with the target condition(s); access to effective intervention(s) for the condition(s); and positive benefits from the early initiation of intervention. Despite their infrequent use, a number of routine screening instruments for unhealthful habits and risky behaviors are available for use in primary care settings. Common instruments for alcohol and drug use include the Problem Oriented Screening Instrument for Teenagers (POSIT) (Rahdert, 1991), the Alcohol Use Disorders Identification Test (AUDIT) (Babor et al., 2001), and the RAFFT (Relax, Alone, Friends, Family, and Trouble) (Riggs and Alario, 1989) and CRAFFT (Car, Relax, Alone, Forget, Family, Trouble) tests for adolescent substance use (Knight et al., 1999). Similar instruments are available for depression and suicidality. Routine urine tests for sexually transmitted infections (STIs), such as chlamydia, are recom- mended for all sexually active adolescents (American Medical Association, 1997). HEADSS (Home, Education, Activities, Drug use and abuse, Sexual behavior, Suicidality and depression; or Home, Education, Alcohol, Drugs, Smoking, Sex) has also been used for many years as a provider-driven questionnaire for assessing unhealthful habits and risky behaviors in adoles- cents (Cohen, Mackenzie, and Yates, 1991; Van Amstel, Lafleur, and Blake, 2004). Instruments for assessing nutrition and exercise for adolescents in primary care have not been extensively studied. An alternative to surveys or questionnaires completed by patients and families is semistructured questionnaires for clinicians to administer to pa- tients. An example, issued by the AMA, is Bright Futures: Guidelines for Health Supervision of Infants, Children and Adolescents (GAPS), which consolidates national guidelines of multiple professional organizations (e.g., AMA, AAP) for preventive screening, counseling, and health education services for both adolescents and children into one set of recommendations endorsed by all these organizations (American Medical Association, 1997).

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 199 Recommendations for adolescents are organized into four types of services that address 14 separate topics or health conditions (see Box 4-1). These guidelines offer physicians recommendations for identifying ado- lescents at risk and helping them change or prevent unhealthful behaviors. They suggest specific questions providers can ask their young patients as gateways for addressing concerns in such areas as physical, social, and emotional development; oral health habits; and sexual practices. These guidelines emphasize periodic health care visits for health education and preventive screening to provide opportunities for counseling, anticipatory guidance, early identification, and referral for medical, behavioral, and emotional risks. According to the GAPS, health care providers should ask all adolescents about risky behaviors every year, including their use of to- bacco products, alcohol, and other substances; behaviors or emotions that indicate recurrent or severe depression or risk of suicide; and any sexual behavior that may result in unintended pregnancy or STIs. The guidelines further specify that at-risk adolescents should be counseled about how to reduce their risks. It should be noted that the GAPS are based on consensus among experts and are not required to be evidence based. In contrast, the U.S. Preventive Services Task Force (USPSTF) also issues recommendations for clinical preventive services, but does so only if evidence for the effective- ness of the counseling or screening is available, and only after using study results to weigh the benefits against possible harm. Because research-based evidence is often not available, the recommendations of the USPSTF are less extensive than the GAPS. For example, the USPSTF has not issued a recommendation with respect to preventing obesity because an evidence base to support the effectiveness of such counseling does not exist. On the other hand, the USPSTF does recommend both chlamydia screening and counseling on family violence (U.S. Preventive Task Force and Agency for Healthcare Research and Quality, 2004, 2007). As discussed previously, the unhealthful habits and risky behaviors tar- geted for screening in primary care are highly prevalent among adolescents and are associated with significant morbidity and mortality both during and after adolescence. Moreover, many of these behaviors could be mitigated by early treatment. Less clear, however, is whether adolescents who screen positive for these behaviors will have the insurance benefits, transportation access, or cultural predisposition to take advantage of such treatment. It is clear that most criteria for the implementation of screening for unhealthful habits and risky behaviors as part of adolescent primary care, especially those related to depression, substance use, and violence, are not met in most settings that treat large numbers of adolescents, but should   See www.ahrq.gov/clinic/prevenix.htm.

200 ADOLESCENT HEALTH SERVICES BOX 4-1 Guidelines for Adolescent Preventive Services (GAPS) GAPS recommendations are organized into four types of services that address 14 separate topics or health conditions: •  hree recommendations pertain to the delivery of health care services. T •  even recommendations pertain to the use of health guidance to promote S the health and well-being of adolescents and their parents or guardians. •  hirteen recommendations describe the need to screen for specific con- T ditions that are relatively common among adolescents and that cause significant suffering either during adolescence or later in life. •  ne recommendation pertains to the use of immunizations for the primary O prevention of selected infectious diseases. The 14 topics or health conditions addressed by GAPS are divided into those aimed at health promotion and those aimed at disease prevention: Promotion • Parents’ ability to respond to the health needs of their adolescents • Adjustment to puberty and adolescence • Safety and injury prevention • Physical fitness • Healthy dietary habits and prevention of eating disorders and obesity •  ealthy psychosexual adjustment and prevention of the negative health H consequences of sexual behaviors Prevention • Hypertension • Hyperlipidemia • The use of tobacco products • The use and abuse of alcohol and other drugs • Severe or recurrent depression and suicide • Physical, sexual, and emotional abuse • Learning problems • Infectious diseases SOURCE: American Medical Association (1997). be a priority. Primary care systems must assess their capacity to process screening results, the prevalence of various problems in their community, and the capacity of local treatment services to respond before deciding whether to initiate screening in each risk area. With regard to expanding the capacity of local treatment services to respond, primary care providers

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 201 for adolescents may have a role to play, including direct management in the primary care setting. Changes in screening practices and treatment capac- ity are likely to benefit marginalized and more vulnerable adolescents the most since carefully worded instruments and standardized services would eliminate some barriers to inquiry about unhealthful and risky behaviors that are especially salient for these individuals. Such changes are unlikely to come about quickly or at all without major external impetus. Significant financing changes currently under way are es- pecially likely to move screening to the forefront. Specifically, the increased willingness of payors to reimburse primary care clinicians for screening and assessment activity and the rapid expansion of pay-for-performance con- tracting that rewards early detection, as well as the greater availability of automated screening tools and brief paper tools, are all likely to encourage clinicians to consider universal screening during adolescent visits. Assessment Research has identified a developmental sequence in the emergence of unhealthful habits and risky behaviors such as substance use. Yet the use of one drug does not inevitably lead to the use of more potent drugs (Golub and Johnson, 1994), nor does it mean that current use will extend indefinitely (Chen and Kandel, 1995). Uncertainty about the strength of the pathway hypothesis creates challenges for assessment of the meaning and implications of positive results of screening for unhealthful habits and risky behaviors, especially those involving substance use. The substantial heterogeneity of the adolescent population and the absence of predictive models make it difficult to distinguish adolescents who are at substantial risk of chronic or problematic substance use or dependency from those who engage in one-time or short-term experimentation with hazardous substances or behaviors as part of normal adolescent development and peer interaction. Positive results of a screen for substance use or other unhealthful habits or risky behaviors must therefore be carefully assessed to determine the characteristics, severity, and duration of the problem and to identify an appropriate course of treatment and follow-up. Many health care provid- ers feel ill equipped to provide detailed assessments of positive screens or suspicions of behavioral, reproductive, or developmental concerns for their adolescent patients (Horwitz et al., 2007). As a result, they tend to refer their patients to specialty practices that may focus on only one dimension of unhealthful habits and risky behaviors that frequently co-occur (treatment for alcohol use, for example, in the presence of smoking and unprotected sex). Substantial delays may occur between initial screening and assessment, during which other risk factors or behaviors may emerge that complicate

202 ADOLESCENT HEALTH SERVICES the determination of a best course of action. Alternatively, new protective factors (such as family reunification, positive peer interactions, athletic suc- cess, or improved school achievement) may emerge that could mitigate the results of the initial screen and alter the preferred course of action. Concerns about privacy and confidentiality (discussed in detail later in this chapter) are particularly significant during screening and assessment, when sensitivity to stigma and bias may affect the adolescent patient’s will- ingness to trust and communicate with health professionals or return for follow-up care. Low-income and minority adolescents are at particular risk of being labeled with certain risk factors prior to an in-depth assessment of their overall health status and history. For example, African American youths are more likely to be diagnosed with conduct disorder and less likely to be diagnosed with depression than comparable white youths (Cuffe et al., 1995). High-risk populations also are especially likely to lack access to effective care management and treatment services, as discussed in later chapters. Health Management Health management of unhealthful habits and risky behaviors in pri- mary care settings has a limited research base except for some studies of specific domains or risks. For example, there has been considerable research on the prescription of psychotropic drugs for the management of depres- sion and attention-deficit hyperactivity disorder (ADHD) in primary care settings (Harpaz-Rotem and Rosenheck, 2006; Hoagwood et al., 2000; Murray et al., 2005; Rushton, Clark, and Freed, 2000; Zito et al., 1999). Primary care clinicians are the most common prescribers of psychotropic drugs to adolescents, in part because of the large number of younger ado- lescents receiving stimulants for ADHD. Rapid growth was also seen in the prescribing of antidepressants for adolescents until the U.S. Food and Drug Administration issued recent warnings about possible associations with suicidal ideation (U.S. Food and Drug Administration, 2007). The provi- sion of effective services for adolescents with mental health and substance use disorders will continue to require that primary care clinicians manage psychiatric medications for large numbers of adolescent patients because there will never be a sufficient number of child psychiatrists to do so. To accomplish medication management effectively, primary care clinicians need specific training in the use of these medications and better processes for monitoring side effects and adherence, attendance at follow-up visits, and changes in symptoms and functioning. Such activities are almost impos- sible to conduct within a small primary care practice without additional staff. Multiple practices employing common records, in partnership with pharmacy benefit programs, disease management organizations, or health

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 203 plans, likely must coordinate such efforts through guild organizations or managed care plans. Since counseling takes time, new organizational structures and physician-extender professionals may be needed to permit a shift from treatment to prevention. Physicians and other health workers dealing with adolescents may need to acquire new skills in such promising techniques as solution-focused interviewing, the medication interest model, and motiva- tional interviewing (Cheng, 2007). The latter technique has been shown in college students to reduce risky behavior related to alcohol (LaBrie et al., 2007b), increase condom use (LaBrie et al., 2007a), potentially improve patient involvement in dental care and smoking cessation counseling by dentists (Koerber, Crawford, and O’Connell, 2003), and potentially enable patients to control diabetes (Dale et al., 2007). Although many physicians feel comfortable interviewing patients and families, formal physician train- ing in these manual-based techniques, including role play, has been shown to improve satisfaction and outcomes for patients (Wissow et al., 2008). While primary care management of mental health disorders such as ADHD and depression is fairly well documented, much less evidence exists on the primary care management of high-risk sexual activity, substance use disorders, adolescent obesity, or other nutritional problems. In part, this is attributable to the lack of pharmaceutical interventions for these problems, from which clear data for research on ADHD and depression management are generated. It is also true, however, that ideal services for primary care interventions for these other problems have not been well described. For example, few successful interventions for adolescent obesity have been documented in any settings (Hawley, Beckman, and Bishop, 2006; O’Brien, Holubkov, and Reis, 2004; Quintos and Castells, 2006). Similarly, primary care management strategies for adolescent substance use are largely unstudied. Because these problems are so understudied, many researchers have fo- cused on the importance of the clinician–patient relationship in adolescent primary care. Relationships between adolescents and parents, families, peers (especially best friends), and extrafamilial individuals play a significant role in adolescent development (Collins and Laursen, 2000). Although research in this area has not explicitly addressed relationships between adolescents and their health care providers, it offers intriguing opportunities to study the attributes and processes that attract (or repel) adolescents to certain providers and care environments. The presence or absence of supportive relationships provides a context for socialization and the inculcation of social norms, as well as models for future relationships, including the capacity to relate effectively to others (Hartup, 1986; Maccoby, 1984). The affective quality of the relationship between a health care provider and an adolescent can therefore be as im-

204 ADOLESCENT HEALTH SERVICES portant as the content or quality of the service provided, especially if it reinforces the adolescent’s positive experience with a parent–child relation- ship or addresses dimensions that lie beyond the sphere of parent–child communications. Through their relationships with health care providers, adolescents can be encouraged to disclose health conditions and behaviors of concern and to become attentive to risks and protective factors that influence their current and future health status. Significant attention is therefore warranted to understand how supportive relationships can be cultivated and sustained in the provision of health services in ways that lead to positive health outcomes for adolescents, especially those in vulnerable circumstances. Of course, such relationships and their benefits are greatly enhanced by longitudinal care provided over many years to adolescents and their families. When care is less continuous and youths are seen only once every few years, the potential benefits are much more difficult. In addition to the establishment of close ties with adolescents, primary care management will increasingly require monitoring strategies. Adoles- cents are particularly vulnerable to low rates of attendance at follow-up appointments, failure to adhere to medication instructions, and inadequate communication with health care providers. Numerous strategies for im- proving communication and monitoring have shown promise. These range from better communication links, such as automated calls and messages through cell phones and the Internet (described later in this chapter), to contact that involves problem solving and motivational interviewing be- tween visits. As with other components of high-quality primary care for adolescents, regional coordination across multiple practices and settings can diminish the cost of such interventions for individual practices. Referral Once an adolescent patient has been screened and assessed, the provider must determine what course of action is most appropriate. In some cases, the patient may need to be referred to another care setting for treatment. In many situations, the primary care provider may not be familiar with community resources that are appropriate to address the behavior in ques- tion. This is the case especially for patients who have difficulty navigating traditional health service settings or those whose insurance panel provid- ers may not include the resource considered most appropriate. Indeed, primary care clinicians cite a lack of referral sources as a major barrier to their identifying and meeting the mental health needs of adolescents and their families (Horwitz et al., 2007). Strategies that may support providers in finding and engaging with community partners are described below. For purposes of efficiency, these strategies may be pursued by groups of clini- cians or practices in partnership.

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 205 Specialists in pediatrics, oral health, mental health, and substance abuse can help primary care clinicians with diagnosis and/or therapy. Ideally, the primary care clinician will develop or have access to a community specialty or mental health resource guide, cross-referenced by the type of third-party payment each provider accepts and the types of evidence-based therapies offered. Such directories have been a central focus of early intervention programs nationwide and have been important in increasing referrals for young children with developmental disabilities (Dunst and Trivette, 2004). For mental health, specific evidence-based psychotherapies are documented online by the Substance Abuse and Mental Health Services Administration and the American Psychological Association, along with their supporting evidence. Directories that can provide a starting point for clinicians seeking mental health and/or substance abuse resources may be available from the local health department, community mental health or substance abuse agency, emergency department, or 211/311 resource line, or from family and consumer advocacy groups (such as the National Alliance on Mental Illness, Mental Health America, the Federation of Families for Children’s Mental Health, or Children and Adults with Attention Deficit/Hyperactivity Disorder). Initially, information can be collected through a mailed question- naire, but having a mental health professional speak personally with mental health agency representatives or individual mental health or substance abuse clinicians is invaluable in clarifying qualifications and services. A community can seek funding for this process from nonprofit or govern- mental sources; frequently, the public mental health agency will fund and staff its continuation. In some regions, family support networks—organizations aimed at linking families to resources for adolescents with special health needs—are available to clinicians. There may be a state, regional, or local office that maintains a directory of resources and/or provides live referrals and strate- gies for negotiating the system. While community networks and directories may have been available for many years, in some domains, such as behav- ioral health and domestic violence, primary care clinician referrals are low, and clinicians report being unfamiliar with such resources. In many areas of the country, managed care “carve outs”—separate insurance plans for the delivery of specialty oral health, mental health, and substance abuse benefits—provide their insured customers with a limited panel of professionals who may or may not have expertise in working with adolescents and may or may not provide evidence-based interventions. Furthermore, the primary care clinician may have no access to the list of   See http://www.nrepp.samhsa.gov/.   See http://www.apa.org/practice/ebpreport.pdf.

206 ADOLESCENT HEALTH SERVICES professionals on an insurance plan’s mental health panel. Typically, families must access these services directly, often through a 1-800 number or other “gatekeeper” arrangement. In these situations, primary care clinicians must focus advocacy efforts on regional directors of these ambulatory managed care plans and on insured families and their employers to make them more knowledgeable about adolescent needs. It is important to include school contacts in community mental health resource directories. Schools are the largest de facto provider of mental health services (Burns et al., 1995), although most school- based mental health personnel (guidance counselors, social workers, psychologists) typically focus on attendance, testing, course selection, and college preparation rather than on mental health needs unless they are part of more comprehensive systems. Care Management of Specialty Services One of the most challenging aspects of the decentralized U.S. health system is the absence of resources devoted to managing specialty care ser- vices and easing transitions across multiple settings for the treatment of chronic, complex, or comorbid health conditions. While these challenges exist for all populations, they are especially problematic for adolescents and their families who lack experience in navigating transitions between primary and specialized care settings. Appropriate care management prac- tices can help avoid unnecessary or duplicative tests and assessments and align services and treatments so they complement and reinforce each other, instead of producing adverse effects or confusing outcomes. Care management duties can be time-consuming and often are uncom- pensated by most current U.S. payors. They involve such tasks as identify- ing appropriate providers, scheduling appointments, requesting information on the results of laboratory and other diagnostic tests, reviewing the relative merits of alternative treatment regimens, responding to adverse effects or uncertain treatment outcomes, and assessing medications and therapies to identify potentially harmful interactions. While many office personnel are capable of scheduling appointments, other care management tasks (such as identification of the interactions of multiple medications and periodic assessments of health status) require greater expertise. The responsible performance of care management duties can make the adolescent patient more willing to comply with recommended treat- ments and specialty care. In the absence of such support and assistance, the adolescent or family members may bear sole responsibility for care management. Experience with delays, unexpected complications, repeti- tive or duplicative tests and assessments, and financial burdens can lead to

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 207 frustration and ultimately to refusal to comply with referrals that require the navigation of complex procedures or health systems. Recent studies of medical errors, patient safety, and patient-centered care have called attention to the importance of smoothing transitions across multiple providers and care settings (Institute of Medicine, 2000, 2001, 2004, 2007b). While information technology may help resolve some of these problems, adolescents require additional support in care manage- ment, particularly when their parents or other adults are not available to assist them in making decisions or to help them navigate fragmented health services. Summary Health settings can play a critical role in the early identification, man- agement, and monitoring of adolescents who are experimenting with un- healthful habits and risky behaviors. Fulfilling this role, however, requires an intentional and systematic process of screening, assessment, health man- agement, referral, and care management of specialty services. When incor- porated into routine primary care services, these elements can contribute to more effective health services for adolescents. LINKAGES BETWEEN PRIMARY AND SPECIALTY CARE SERVICES To meet the health needs of adolescents, it is critical for general health settings and especially primary care sites to improve their ability to identify, assess, and manage risky behaviors and emerging behavioral, nutritional, oral, and sexual and reproductive health issues. Yet a critical deficiency of current adolescent primary care is the linkage with specialty health ser- vices in these important areas. Adolescents referred for specialty services frequently fail to connect effectively to these services. For some types of services, such as mental health, the vast majority of adolescents referred for care fail to complete a minimum number of sessions (Gardner et al., 2004; Rushton, Bruckman, and Kelleher, 2002). Establishing strong link- ages to the various specialty services, as well as mechanisms for monitoring successful transitions between primary and specialty care, would improve the accessibility, acceptability, and appropriateness of health services for adolescents, particularly those who are more vulnerable. Mechanisms for improving linkages between primary care settings and various specialty ser- vices generally fall into three categories: specific referral practices, referral management, and specialty consultation (see Federal Expert Work Group on Pediatric Subspecialty Capacity et al., 2006). Referral practices can be improved through referral guidelines—specific algorithms for clinical management that clarify particular assessment plans

208 ADOLESCENT HEALTH SERVICES in primary care and specialty settings, criteria for referral, and planned follow-up. Referral practices can also be improved through preappoint- ment management of referrals by specialists. In such cases, specialists briefly review prior records and results to determine the extent of specialty and primary care coordination and management required. Preappointment management reduces specialty waiting lists, improves communication, and enhances coordination. Referral management is the term used for comprehensive case manage- ment of referral processes employing support services that are specific to individual patient and family needs, including transportation assistance, structured telephone reminders, encouragement to attend, babysitting for a parent’s other children, and related services. Such services have been used for high-risk populations in urban, low-income settings to increase service use and for homeless families or adolescents with substance use disorders. Finally, specialty consultation approaches can be used to strengthen the interface between primary care and specialty services for adolescents. For the past several decades, child psychiatrists have provided consultation and liaison psychiatry services primarily to adolescents in academic medical cen- ters. New models have been developed, however, for organizing and financ- ing such services in community primary care settings for both rural (Campo et al., 2005) and urban (Williams, Shore, and Foy, 2006) adolescents. Even more promising, telephone support services provided by regional child psychiatrists for primary care clinicians seeing adolescents with psychiatric medication needs have expanded greatly in the past 5 years, with some early success (Connor et al., 2006; Young and Ireson, 2003). The historical dichotomy between the delivery of dental and medical care requires special attention to linkages between these two care systems. The dental care delivery system functions separately from the medical care system; lacks a discrete adolescent focus; is rarely collocated with medical services for adolescents; and is overwhelmingly private, with only a small safety-net component that is readily accessible to the socially and medically disadvantaged. Physicians typically do not screen for dental caries and peri- odontal disease, the two most common oral health problems in adolescence. They are therefore less likely to consider targeted referrals for resolution of these as compared with other conditions. Conceptually, a closer linkage between dental and medical care is inherently worth promoting because dental and medical conditions share common risk factors, and because systemic and oral diseases often have complementary presentations and consequences. As described in Chapter 2, drug, tobacco, and alcohol use, as well as driving, firearm use, sports, and sexual activity, all can manifest as oral trauma and pathology, and poor eating patterns and food choices are directly associated with dental caries. Because many adolescents come in frequent contact with dental professionals through routine preventive

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 209 dental visits and orthodontic treatment, there are also opportunities for dentists to screen adolescents and refer them to primary medical care. All of these linkages between primary care clinicians and specialists caring for high-risk adolescents will benefit to the extent that expectations and responsibilities for each are clearly articulated. The use of service agree- ments between primary care and specialty providers, besides specifying the types of services offered at each site, can clarify and expedite the transfer of information and referrals between sites and facilitate processes for handoffs of care to and from specialty settings. Specification of waiting times and facilitated appointments may be part of such agreements. Comanagement or multidisciplinary approaches are often reserved for the few adolescents with multiple disorders or conditions requiring complex services with high costs. In such cases, team communication is the essential element. Collo- cation of specialty, dental, and primary care services is beneficial in some settings, especially for adolescents with transportation and confidentiality concerns. The shortages and inequitable distribution of mental health, oral health, sexual and reproductive health, nutritional, and other specialty services necessary for adolescents are long-standing problems. Several decades of calls for change and modest policy initiatives to alter both the volume and location of such services have met with very limited success (Kim and The American Academy of Child and Adolescent Psychiatry Task Force on Workforce Needs, 2003). In response to similar concerns in other fields, comprehensive regional plans have been developed. Thus, fields as diverse as neonatology, burn care, trauma, craniofacial surgery, pediatric oncology, and cystic fibrosis have developed and implemented regional coordinated services in pediatric and adult medical settings (American Academy of Pediatrics, American College of Critical Care Medicine, and Society of Critical Care Medicine, 2000; David, 1977; Klitzner and Chang, 2003; McCormick, Shapiro, and Starfield, 1985; Praiss, Feller, and James, 1980). Such services provide stepped care processes that aim to prevent problems, identify those that are in the early stages, manage early processes in local settings, and transfer complex cases to regional facilities as soon as pos- sible. This stepped care model is usually coordinated at the regional level. Similar plans will be essential if there is to be any hope of maximizing the services provided by the scarce specialists with adolescent experience cur- rently available. In summary, the establishment of strong links between primary care and community prevention services, dental care, and various medical spe- cialty services would contribute to making health services more accessible, acceptable, and appropriate for adolescents. Establishing mechanisms for monitoring successful transitions between primary care and community,

210 ADOLESCENT HEALTH SERVICES specialty, and dental care could also improve services and health systems in the future. HEALTH PROMOTION, DISEASE PREVENTION, AND YOUTH DEVELOPMENT Some adolescents lack regular access to primary care services (Newacheck et al., 1999). This gap is frequently associated with poor insurance status, financial limitations, insurance coverage restrictions, and limited access to trained providers, as discussed in Chapters 5 and 6. But even for those adolescents who have routine access to primary care, their providers and the settings in which they receive health services are rarely equipped to provide guidance or resources that encourage them to adopt healthy behaviors in such basic areas as nutrition, physical activity, injury prevention, substance use (including drugs, alcohol, and tobacco), peer interactions, and sexual relationships. Various health settings or programs may provide opportunities to strengthen health promotion and disease pre- vention. As well, the area of youth development offers another approach to promoting health among adolescents. Health Promotion A population-based health care delivery system focuses not just on risk reduction, but also on the creation of environments and behaviors that promote healthy outcomes for adolescents. As with disease preven- tion (discussed below), health promotion for adolescents needs to involve multiple individuals, including the adolescent him- or herself, the primary care provider, the family, and the community. Dentists have a particular opportunity to promote not just oral but also systemic health given that, as noted Chapter 3, they are likely to have frequent and often lengthy visits with many adolescents, especially those undergoing orthodontic treatment. Tobacco use—including not only smoking, but also use of spit tobacco—is an example of a behavior with both oral and systemic health consequences that dentists can address with their patients. The Society for Adolescent Medicine (SAM) has developed educational materials to help adolescents assume responsibility for their health and to guide them in seeking advice from health professionals. Health Guide for America’s Teens, for example, is a brochure that includes explicit health guidance, as well as a list of more than a dozen resource centers that are equipped to address such problems as adolescent violence, child abuse, sex- ual assault, and teen pregnancy (Society for Adolescent Medicine, 2003). Other adolescent-focused websites in the SAM brochure that offer health promotion guidance include http://www.teenwire.com (produced by the

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 211 Planned Parenthood Federation of America) and http://www.iwannaknow. org (produced by the American Social Health Association). Both websites focus predominantly on sexual and reproductive health issues. The website http://www.kidshealth.org/teen (produced by the Nemours Foundation) of- fers a broader network of educational materials, answers and advice, and adolescent profiles that cover such topics as food and fitness, drugs and alcohol, body and mind, school and jobs, and living with parents. Despite the availability of these sources, little is known at present about the extent to which individual clinicians or health practices are aware of the existence of print and electronic health promotion materials or how these materials are used in providers’ encounters with young patients. As a result, the impact of such advisories and educational materials on health outcomes for adolescents or adolescent engagement with health services remains uncertain. Through their national organizations and state chapters, providers should endeavor to present messages consistent with those of other groups and to encourage healthy behaviors through available educa- tional materials. Disease Prevention As noted earlier in this chapter, unhealthful habits and risky behav- iors directly related to leading causes of premature death and disease in adulthood are usually initiated in adolescence, but have consequences that extend into adulthood. These behaviors are interrelated and preventable, a fact that argues for a major shift from treatment to prevention in primary care for adolescents. Interventions Improved screening is the first step in disease prevention, and as dis- cussed earlier, evidence suggests that this can be accomplished. The next step is to improve interventions, especially those focused on enhanced com- munication. Such improvement needs to occur at multiple levels, including the primary care provider, the family, and the community. Personalized messages tailored to the needs of the adolescent are an important part of successful disease prevention programs. For example, physician-delivered personalized messages regarding weight management succeeded in producing weight loss in low-income obese African American women in one trial, and show great promise for adolescent care (Davis et al., 2006). To communicate such messages, practices will need to employ technologies used by adolescents, such as text messaging (Franklin et al., 2006), web-based feedback (Doumas and Hannah, 2007), and telephone

212 ADOLESCENT HEALTH SERVICES messages (Burleson and Kaminer, 2007; Dale et al., 2007) (see also the discussion of health information technology later in this chapter). Most successful prevention programs seek not only to respond to and reduce negative influences on the adolescent, but also to strengthen positive, protective factors. These protective factors operate within multiple domains—the individual, the family, the school, the peer group, the neigh- borhood, and the larger community. Intervention with the family is an important component of most suc- cessful disease prevention programs. Brief family interventions have been found to be successful in preventing adolescent substance abuse (Spoth, Redmond, and Shin, 2001). Combining a school-based life skills training program with a program to strengthen parent–child bonds was much more successful in preventing alcohol initiation than was a life skills training program alone (Spoth et al., 2002). Community-level interventions are also important. A great deal of research over the last two to three decades has shown that interventions in the community can be effective in preventing some high-risk behaviors and health problems in adolescents. Some of these interventions focus on selected local settings (the family, the school, the neighborhood, and the community); others emphasize changes that potentially affect all adoles- cents in the nation (such as tax increases on alcohol and tobacco or changes in labeling practices for foods and beverages). Primary care physicians can be powerful voices in these policy changes. The most effective strategies for preventing smoking among adolescents are increases in the tax on cigarettes and media campaigns against smoking (Institute of Medicine, 2007a). Such approaches have been effective, can save thousands of lives (Rivara et al., 2004), and end up generating net revenue (Fishman et al., 2005). Community-based interventions to decrease underage adolescents’ access to alcohol can reduce high alcohol consump- tion and decrease injuries and fatalities due to alcohol-related motor ve- hicle crashes (Holder et al., 2000; National Research Council and Institute of Medicine, 2004). Increasing taxes on alcohol and limiting advertising aimed at adolescents can be effective community-level interventions as well (Hollingworth et al., 2006). Comprehensive communitywide interventions, such as the Communi- ties That Care program, provide selected jurisdictions with the capacity to organize service delivery in ways that utilize disease prevention science. That program assesses community strengths and risks and matches the community’s priorities to tested effective programs (Hawkins, Catalano, and Arthur, 2002).

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 213 Immunization Immunization is a special case of disease prevention. Immunization care for adolescents is inextricably related to primary care and preventive health strategies. Unfortunately, as discussed in Chapter 3, the proportion of adolescents making any sort of a visit to a health care provider decreases as adolescents mature, as does the proportion making a health maintenance visit in particular (Schuchter and Fairbrother, 2008). Lessened contact with primary care settings impedes high immunization coverage levels. Immuni- zation visits may be the draw for parents to bring their infants and young children to a physician. The fact that visits, particularly health maintenance visits, decline in adolescence is a barrier that needs to be overcome. Perhaps immunization requirements for adolescents can act as a draw for this group to come to primary care as well. Impediments to achieving the goal of universal immunization of ado- lescents revolve around reimbursement and education. The National Vac- cine Advisory Committee has recommended “substantial, but incremental changes to the current system,” including expanded funding of the existing immunization grant program, expansion of the Vaccines for Children pro- gram, promotion of “first dollar” insurance coverage for immunizations, and assurance to the provider of adequate reimbursement for the admin- istration of vaccines (Hinman, 2005). Other strategies for ensuring good vaccination coverage for adolescents involve education on the need for the vaccines and on the appropriate visit schedule (Middleman et al., 2006). Although an annual health maintenance visit for adolescents has been recommended by multiple agencies and professional groups, there has in the past been no need for recommended immunizations and other services that would bring patients in this age group into care. The new recom- mended immunizations, such as those for the human papillomavirus (HPV) (Markowitz et al., 2007), necessitate standard visit platforms with recom- mendations that target age groups within the adolescent years. SAM has endorsed a set of recommendations for improving immu- nization coverage of the adolescent population, including the following (Middleman et al., 2006): • The use of all vaccines and vaccination schedules promulgated by the Advisory Committee on Immunization Practice for the adoles- cent age group. • The development of three distinct vaccination visit platforms for adolescents (an 11- to 12-year visit, a 14- to 15-year visit, and a 17- to 18-year visit) to integrate and emphasize the role of vaccina- tion in already recommended comprehensive health maintenance visits.

214 ADOLESCENT HEALTH SERVICES • The use of immunization standing orders, immunization screening tools, immunization registries, and immunization reminder and recall systems. • The simultaneous administration of multiple vaccines to increase vaccination rates. • The use of “noncomprehensive” visits (e.g., minor illness visits, camp/sports physical visits, precollege visits) and qualified “alter- native” vaccination sites (e.g., pharmacies, schools) to administer vaccines. • The continued and increased education of health care providers, parents, and adolescents regarding the disease prevention benefits of immunization. While vaccinations are available for many pediatric and adolescent infectious diseases that were once far more common, a clinically effective immunization for dental caries has yet to be developed, despite a biologi- cal basis for its development (Taubman, and Nash, 2006). At this time, the most effective preventive interventions for caries are dental sealants and topical use of fluorides (Adair et al., 2001; National Institutes of Health Consensus Development Conference Statement, 2001). Widespread avail- ability of these two preventive interventions holds strong promise for reduc- ing caries among adolescents. Youth Development The 2002 report Community Programs to Promote Youth Develop- ment (National Research Council and Institute of Medicine, 2002) identi- fies a set of personal and social assets that facilitate youth development (see Box 4-2). These assets address four domains of development: physical, intellectual, psychological/emotional, and social. They are drawn from an extensive research base that highlights the importance of and relationships among these personal assets in contributing to an adolescent’s capacity to navigate transitions from childhood to a productive adult life (Compas et al., 1986; Entwisle, 1990; Wentzel, 1991). The report also identifies posi- tive features of youth settings that support the development of these assets (see Table 4-1). The key features are physical and psychological safety; appropriate structure; supportive relationships; opportunities to belong; positive social norms; support for efficacy and mattering; opportunities for skill building; and integration of family, school, and community efforts. The presence of these features has been demonstrated to foster the personal assets described in Box 4-2 and to contribute to the formation of settings that are helpful to adolescents (see National Research Council and Institute of Medicine, 2002, for a detailed review). Table 4-1 describes how these

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 215 BOX 4-2 Personal and Social Assets That Facilitate Positive Youth Development Physical Development • Good health habits • Good health risk management skills Intellectual Development • Knowledge of essential life skills • Knowledge of essential vocational skills • School success • Rational habits of mind—critical thinking and reasoning skills • In-depth knowledge of more than one culture • Good decision-making skills • Knowledge of skills needed to navigate through multiple cultural contexts Psychological and Emotional Development • Good mental health, including positive self-regard • Good emotional self-regulation skills • Good coping skills • Good conflict resolution skills • Mastery motivation and positive achievement motivation • Confidence in one’s personal efficacy • “Planfulness”—planning for the future and future life events • Sense of personal autonomy/responsibility for self • Optimism coupled with realism • Coherent and positive personal and social identity • Prosocial and culturally sensitive values • Spirituality or a sense of a “larger” purpose in life • Strong moral character • A commitment to good use of time Social Development •  onnectedness—perceived good relationships and trust with parents, C peers, and some other adults •  ense of social place/integration—being connected and valued by larger S social networks •  ttachment to prosocial/conventional institutions, such as school, church, A and nonschool youth programs • Ability to navigate in multiple cultural contexts • Commitment to civic engagement SOURCE: Reproduced from National Research Council and Institute of Medicine (2002).

216 TABLE 4-1 Features of Positive Developmental Settings Descriptors Opposite Poles Physical and psychological safety Safe and health-promoting facilities; Physical and health dangers, fear, feeling of practice that increases safe peer-group insecurity, sexual and physical harassment, interaction and decreases unsafe or verbal abuse. confrontational peer interactions. Appropriate structure Limit setting, clear and consistent Chaotic, disorganized, laissez-faire, rigid, rules and expectations, firm-enough overcontrolled, autocratic. control, continuity and predictability, clear boundaries, and age-appropriate monitoring. Supportive relationships Warmth, closeness, connectedness, Cold, distant, overcontrolling, ambiguous good communication, caring, support, untrustworthy, focused on winning, support, guidance, secure attachment, inattentive, unresponsive, rejecting. responsiveness. Opportunities to belong Opportunities for meaningful inclusion, Exclusion, marginalization, intergroup regardless of one’s gender, ethnicity, conflict. sexual orientation, or disabilities; social inclusion, social engagement and integration; opportunities for sociocultural identity formation; support for cultural and bicultural competence. Positive social norms Rules of behavior, expectations, Normlessness, anomie, laissez-faire practices, injunctions, ways of doing things, values antisocial and amoral norms, norms that and morals, obligations for service. encourage violence, reckless behavior, consumerism, poor health practices, conformity.

Support for efficacy and mattering Youth-based empowerment practices Unchallenging, overcontrolling, that support autonomy, making a real disempowering, disabling. Practices that difference in one’s community, and undermine motivation and desire to learn, being taken seriously. Practice that such as excessive focus on current relative includes enabling, responsibility granting, performance level rather than improvement. meaningful challenge. Practices that focus on improvement rather than on relative current performance levels. Opportunities for skill building Opportunities to learn physical, Practice that promotes bad physical habits intellectual, psychological, emotional, and habits of mind; practice that undermines and social skills; exposure to intentional school and learning. learning experiences; opportunities to learn cultural literacies, media literacy, communication skills, and good habits of mind; preparation for adult employment; opportunities to develop social and cultural capital. Integration of family, school, and Concordance, coordination, and synergy Discordance, lack of communication, conflict. community efforts among family, school, and community. SOURCE: Reproduced from National Research Council and Institute of Medicine (2002). 217

218 ADOLESCENT HEALTH SERVICES features are made operational and also lists the characteristics associated with their absence. Recent decades have seen the emergence of several organizations that offer technical assistance to community-based efforts to foster youth de- velopment. These efforts are seen as a complement to, and sometimes a substitute for, problem-based disease prevention and treatment programs, especially in such areas as substance abuse, juvenile delinquency, and risky sexual activity. The Center for Youth Development and Policy Research within the Academy of Educational Development, for example, offers an extensive array of research publications and other resources that support the undertaking of such efforts in different communities. Other groups have sought to translate the youth development frame- work to the particular circumstances of health settings. For example, the Mount Sinai Adolescent Health Center in New York City has prepared A Guide for Positive Youth Development (ACT for Youth Downstate Center for Excellence and ACT for Youth Upstate Center of Excellence, 2003) that is now used by the Los Angeles County Public Health Department to assist adolescents in positive growth. Los Angeles County health officials are drawing on the framework articulated in the Mount Sinai guide to shift their programs from a problem and deficit orientation toward one that highlights an adolescent’s strengths, cultivates skill development, and pro- motes healthy relationships (Harding, 2007). The program is built around six principles of youth development (ACT for Youth Downstate Center for Excellence and ACT for Youth Upstate Center of Excellence, 2003): • Strengths: Focus on the strengths rather than the deficits of adolescents. • Youth engagement: View adolescents not just as recipients of services, but also as resources, contributors, and leaders in the program. • Youth/adult relationships: Recognize that the interactions and rela- tionships between adolescents and program staff are as important as the services provided. • Youth voice: Provide an opportunity for adolescents to participate in the organization from which they are receiving services. • Community involvement: Encourage the community, not just the family and professionals, to contribute to the health and well-being of adolescents. • Long-term involvement: Recognize that commitment to a youth development approach requires long-term involvement and cannot be viewed as an isolated or time-limited event.   See http://cydpr.aed.org.

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 219 In another locale, the City of Detroit’s Department of Health and Well- ness Promotion has created a Youth Development Institute (YDI) aimed at preventing the onset of or experimentation with drug use among adoles- cents, primarily those aged 12–18 (Anthony, 2007). The program is built on a framework similar to that of the Los Angeles program. Lessons learned from the Detroit YDI experience highlight the importance of providing transportation, especially for adolescents from families who depend on public transportation. Also important are having mentorship and coun- seling available during after-school hours and on weekends and fostering collaborations across diverse sectors. ENsuring Access to confidential services As reviewed in Chapter 3, health care services that are confidential in- crease the acceptability of services and the willingness of adolescents to seek care, especially for sensitive issues such as sexual behavior, reproductive health, mental health, and substance use. Not only may the confidentiality of health services for patients increase utilization of health care, but it also may be morally appropriate. Providers argue that their ability to protect conversations and records is one of the pillars of the trusting relationship that is a precondition for patients’ comfort in communicating their his- tory, feelings, and symptoms. In support of the moral perspective on this issue, many argue that the personal history and secrets of a patient are the patient’s to hold and to share only when he or she has made the decision to do so. Confidentiality for the adolescent exists within this conversation but is complicated by tensions that do not exist in the adult realm (Friedland, 1994). Society generally accepts that an adult has a right to confidentiality that ends only at possible harm to self or others. Reflecting the latter restric- tions, every jurisdiction has mandatory reporting laws that cover matters as disparate as gunshot and knife wounds, STIs, and communicable diseases. Most of these laws, even those that relate to violence, have a public health rationale and can be justified under the police power of the state. In ad- dition, there is the complexity of child abuse reporting laws and, in a few jurisdictions, elder abuse reporting laws; these laws aim to protect, under the parens patriae power of the state, those who cannot secure their own welfare and protect their own well-being. But adolescents fall under none of these analytic schemes. They are aging out of the parent–child relationship, and their claims to the confi- dentiality enjoyed by adults are evolving rather than already established. Clearly there is no absolute protection for the confidentiality of a small child. Yet even here some have argued that it is in the interest of the devel- opment of the child as a moral person that a confidence shared be guarded

220 ADOLESCENT HEALTH SERVICES with the promise of protection (Murray, 1996). Obviously, keeping a secret that would have a negative impact in the present or the future cannot be ethically supported. But as the child ages and the consequences of keeping confidences have more to do with lifestyle and life choices and less to do with predictable, definable, immediate, or long-term harms, the more claim the adolescent has on the provider’s maintaining confidentiality. As described in Chapter 3, current state and federal policies generally protect the confidentiality of adolescents’ health information when they are legally allowed to consent for their own care. Without these polices in place, adolescents could feel compelled to forego needed health services— particularly in such sensitive areas as sexual behavior, reproductive health, mental health, and substance use. In addition to existing state and federal policies, studies have focused on the specific roles of providers, parents, health care professional organiza- tions, and health care payors in dealing with confidentiality issues. Physi- cians and other health practitioners who care for adolescents understand that, as in medicine generally, the assurance of confidentiality in adolescent medicine is not an absolute. Given that the stakes are high for adolescents and their health and that the persons to whom confidences would be re- vealed are most often parents, health care professionals treating adolescents must constantly walk a fine line in determining how best to secure the trust of their adolescent patients and in deciding what to disclose and when. Role of the Health Care Provider As previously discussed, results of one study suggest that strategies for explaining conditional confidentiality in a way adolescents understand and feel comfortable with can be developed and used in positive ways to foster trust (Ford et al., 1997). This study looked at whether adolescents’ concerns about privacy in clinical settings decreased their willingness to seek health care for sensitive problems and may have inhibited their communication with physicians. The authors of the study conclude that adolescents are more willing to communicate with and seek health care from physicians who assure them of confidentiality. They suggest that further investigation is needed to identify a confidentiality assurance statement that would ex- plain the legal and ethical limitations of confidentiality without decreasing the likelihood that adolescents will seek future health services for routine and nonreportable sensitive health concerns. Another study found that most physicians do not consistently discuss confidentiality with their adolescent patients. Those who do so assure ado- lescents of unconditional confidentiality, which is inconsistent with either professional guidelines or legal limitations (Ford and Millstein, 1997).

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 221 Role of the Parent While professional guidelines for the practice of adolescent medicine stress the importance of privacy and confidentiality in interactions with adolescent patients, parents frequently receive information about their children’s health services. In particular, although adolescents may have an opportunity to confer privately with their health care providers, the bills for their expenses are usually sent to the insured parent or guardian. These bills may disclose the types of services provided or the condition that prompted the visit. Parents are deeply involved in their adolescent children’s health care decisions, and medical professionals recognize both the fact and the im- portance of that involvement. The data cited earlier make this clear: even for intimate forms of care such as reproductive health services and even at public clinics, the great majority of parents are involved (Jones et al., 2005), and most organizations of health care professionals encourage communica- tion between parents and adolescents about important health concerns and health services (Morreale, Stinnett, and Dowling, 2005). Empirical evidence suggests that parents generally think parental no- tification laws make sense, although the majority holding this belief is not as large as some imagine. In one multistate investigation, Eisenberg and colleagues (2005) found that 55 percent of parents favored parental notifi- cation for access to contraception. However, a large majority also favored exceptions. Reinforcing the point made earlier that the health of adolescents is one very important value parents consider, but not the only one, most parents had realistic beliefs about the consequences of parental notification. Hardly any (3 percent) thought adolescents would respond by ceasing to have sex, and the parents understood that notification would lead to an increase in STIs and other adverse outcomes (although it is unclear what they believed the magnitude of those outcomes to be). Yet some parents still supported notification laws. Results of another study suggest that parents’ attitudes can be influ- enced by education. Hutchinson and Stafford (2005) demonstrated that the percentage of parents who initially disagreed with various forms of adolescent privacy dropped by roughly half after exposure to basic facts about the importance of privacy for adolescent health. Unfortunately, the interpretation of “adolescent privacy” in this study was not the same as that in the previous study (the focus was on allowing adolescents to speak with a doctor alone and “the general importance of teen privacy,” not pa- rental notification specifically). Also, the authors do not describe the facts that were presented to the parents to educate them, making it difficult to compare the two studies.

222 ADOLESCENT HEALTH SERVICES Although the evidence is not uniform, the findings of research com- pleted over several decades have consistently supported several key points: (1) most adolescents share information with their parents and seek even sensitive services such as contraception with their parents’ knowledge; (2) privacy concerns influence adolescents’ willingness to seek services at all, their choice of provider, their candor in giving a health history, their will- ingness to accept specific services, and other important aspects of access to care; (3) few adolescents plan to stop risky behaviors if confidential care is unavailable; (4) some parents support the idea of parental notification; and (5) parents often understand the importance of privacy and confidentiality and their potential effect on health and access to health services. Role of Health Care Professional Organizations The confidentiality policies and ethical guidelines of health care pro- fessional organizations tend to acknowledge the important role played by parents in caring for adolescents while favoring confidential access to health care (for an exhaustive treatment, see Morreale, Stinnett, and Dowling, 2005). For example, SAM’s position paper on confidential care for adolescents states that “health care professionals should support effec- tive communication between adolescents and their parents or other caretak- ers. Participation of parents in the health care of their adolescents should usually be encouraged but should not be mandated,” and “confidentiality protection is an essential component of health care for adolescents because it is consistent with their development of maturity and autonomy and without it, some adolescents will forgo care.” The statement goes on to assert, “Laws that allow minors to give their own consent for all or some types of health care and that protect the confidentiality of adolescents’ health care information are fundamentally necessary” (Ford, English, and Sigman, 2004, p. 1). Similarly, an American Academy of Pediatrics position statement says that “the issue of confidentiality has been identified, by both providers and young people themselves, as a significant barrier to access to health care.” The statement goes on to urge providers to communicate with parents while saying that minors should “have an opportunity for examination and counseling apart from parents, and the same confidenti- ality will be preserved between the adolescent patient and the provider as between the parent/adult and the provider” (American Academy of Pediat- rics, 1989, p. 9). A large number of similar position statements from profes- sional medical organizations emphasize the importance of confidentiality for adolescent health (Morreale, Stinnett, and Dowling, 2005).

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 223 Role of the Health Care Payor Even if adolescents are able to consent to care, this does not neces- sarily guarantee confidentiality. In the last 30 years, a number of factors have combined to limit the scope of protections that providers and patients have assumed to exist (Siegler, 1982). Private insurance third-party payors, Medicare and Medicaid, and managed care organizations all require that records be shared so that standards can be set, maintained, and enforced. In addition, the development of electronic medical records, while provid- ing ease of access to patient records and helping to establish the basis for quality review and improvement, also allows for the possibility of electronic breach. Although many electronic systems boast more security than typi- cal paper records, the potential for distribution after an electronic breach remains a concern. Private and public insurance administrative and billing practices of- ten counteract confidentiality protections. As reviewed by Fox and Limb (2008), commercial and public insurers have different explanation of ben- efits (EOB) policies, which vary by state, payor, and program. The EOB statements, which generally list the recipient’s name, services provided, and other service-related information, may be mailed home directly to the adolescent, may be directed to the parent or head of the household, or not mailed at all. These policies may be in direct violation of state and federal laws that afford adolescents the right to consent for certain services. INNOVATIONS IN ADOLESCENT HEALTH SERVICES A greater focus on community resources, linkages to specialty care, and increased standardization of adolescent health services will not happen in a vacuum. Advances in health information technology for adolescents hold promise for facilitating the integration and coordination of adolescent health services across geographic areas. This section describes these innova- tions, and provides a brief discussion of the emerging field of personalized medicine. It also reviews a number of existing examples of health services and systems that have been shown to make services accessible, acceptable, appropriate, effective, and equitable for adolescents. Health Information Technology Changing the settings and system features associated with the delivery of adolescent health services can help create environments that promote key health objectives for adolescents, especially in the context of changes in health services that are occurring more broadly. This environmental ap- proach requires careful attention to selected components that are ripe for

224 ADOLESCENT HEALTH SERVICES change, so that health care providers can convey guidance and information that are consistent with the health objectives for adolescents and young adults of Healthy People 2010 (U.S. Department of Health and Human Services, 2007). Most adolescents already have a sizable array of information and communication technologies at their disposal. Their comfort level with electronic communications and activity far exceeds that of their parents and other older family members, and for many, e-mail, the Internet, social networking sites, mobile phones, and text messaging are an integral form of communication. Health institutions, however, have not kept pace with their young patients in this regard, especially in considering how such tech- nologies can improve health service delivery and reduce unhealthful habits and risky behaviors. Interactive technologies such as instant messaging and text messaging have been redefining the social networks of today’s adolescents. In 2005, 65 percent of American adolescents overall and 75 percent of those who were online used instant messaging (Lenhart, Madden, and Hitlin, 2005). Adolescents report that they use text messaging for keeping in touch and making plans with friends, playing games, and even asking someone out or ending a relationship (Bryant, Sanders-Jackson, and Smallwood, 2006). The SexInfo program in San Francisco has capitalized on this trend by using text messaging to share health information with adolescents, par- ticularly about STIs, HIV, birth control, and sexual health services. In re- sponse to rising rates of chlamydia and gonorrhea among African American adolescents in the city, a public–private partnership launched SexInfo, an information and referral program that helps adolescents learn about sexual health and obtain answers to common questions about STIs and pregnancy. A similar program in the United Kingdom was the model for this program (SexInfo, 2006). Sweet Talk, a pilot text messaging program developed in the United Kingdom for diabetic patients (not aimed at adolescents in particular) de- livers individually targeted text messages and general diabetes information to patients. The program offers a system of contact and support between clinic visits and aims to increase adherence to intensive insulin regimens and improve clinical outcomes (Franklin et al., 2003). In Ireland, Headsup is a text service that provides adolescents access to a range of helplines and support services. Users simply text the word “Headsup” to a free 24-hour text service, through which adolescents can receive, direct to their mobile phones, up-to-date and accurate contact num- bers for organizations that will provide advice on their problems (Rehab, 2007). In addition to text messaging, online mental health services have been provided in some sites with results comparable to those of face-to-face ser-

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 225 vices for some patients. Some rural sites have used real-time video links to deliver mental health services to adolescents. Such techniques are especially promising for areas of professional shortages or for patients who are un- able to attend routine specialty care (Brick, Brick, and D’Alessandri, 2004; Sulzbacher, Vallin, and Waetzig, 2006). Health information technology will play an increasing role in the health care system, providing real-time decision support for patients and clini- cians, educating adolescents and families, encouraging the diffusion of health services from the office to the community, and assisting in the track- ing and coordination of care across regions and providers. Personalized Health Services The new tools described above are part of an increasing array of tech- niques for individualized electronic assessment and intervention. The capac- ity to collect and analyze large amounts of data about individuals, including prior use of health services, previous diagnoses, behavioral issues, and even genomic or proteomic profiles, may make it possible to personalize thera- peutic or preventive interventions for specific conditions. The use of such information is largely limited to research purposes at this time, although ap- plications for adolescents may be emerging. However, the ethical, insurance, prognostic, and financial implications of these new initiatives are not well understood for any group of patients, let alone adolescents in particular. Examples of Innovative Adolescent Health Services A number of efforts are being undertaken across the United States to deliver health services to adolescents in innovative ways. These services are being provided in various settings, with diverse foci, and by a range of providers. These efforts demonstrate both the potential and the drawbacks of highly focused adolescent specialty sites. Almost all of them provide the types of services needed by adolescents—from reproductive services to counseling and mental health—in a more comprehensive way than do tra- ditional primary care settings. In addition, these special sites and programs that cater to adolescents are able to offer numerous nonmedical services, such as vocational or safety classes and instruction. At least as important, all have created an environment that is accessible and acceptable to ado- lescents by reducing barriers related to confidentiality, transportation, and availability. At the same time, these efforts demonstrate the limitations of such highly specialized adolescent models. They rely on staff with ado- lescent expertise, a group in short supply. Moreover, they usually are not well connected with traditional medical services or with services for other

226 ADOLESCENT HEALTH SERVICES members of adolescents’ families. And they often rely on grants and gov- ernmental support to make ends meet. These complexities, together with the limited evaluation of such in- novations and the lack of a standard against which to study them, make it impossible to identify any one model for innovative service delivery for adolescents. Nonetheless, some descriptive, anecdotal reports offer insights into innovative primary care models that work for adolescents. The com- mittee conducted site visits to understand the range of services, settings, and providers involved in these efforts. The sites visited serve as useful examples of adolescent-specific health services delivered in various settings and illustrate what might qualify as lead or coordinating centers in the pro- vision of regional services for adolescents. This section describes the sites visited by the committee, as well as one site documented by Sandmaier and colleagues (2007). Denver Health Denver Health and Hospital Authority is a comprehensive, integrated health system that serves the city and county residents of Denver, Colorado. This system includes a public hospital (with a Level I trauma center), a public health department, and community health services (8 community health centers and 12 school-based centers located throughout the city). It also includes centers for poison, drug, and alcohol treatment; occupational health; behavioral health; and correctional care. A telephone advice line is provided as well. Generally, Denver Health provides the following services throughout the system: medical, dental, psychiatric, psychological, obstet- ric and gynecological, dermatological, and educational. Denver Health is funded by many sources, including federal (330 grants), state, and city funding and patient revenues; the school-based health centers also receive support from a variety of foundations and other partners. Denver Health manages all policies, procedures, protocols, registration, billing, quality assurance, staff development, strategic planning, grant management, utili- zation review, and outcome monitoring internally. The system also works with other community partners, including the local mental health authority, a substance abuse organization, two other local hospitals, Denver public schools, and other community services (Special Supplemental Nutrition Program for Women, Infants, and Children; immunization; early periodic screening, diagnosis, and treatment; and services for children with special health needs). Adolescents utilize primarily Denver Health’s 12 school-based health centers (39 percent of total visits to the Denver Health system), obstet- rics and gynecology clinics (13 percent), pediatric/adolescent clinics (10 percent/18 percent), and family practice offices (14 percent) located in the

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 227 community health service network. The community health centers serve mainly low-income neighborhoods. The most common services provided to adolescents in the school-based and community health centers are im- munizations; health maintenance visits; asthma treatment; gynecological and reproductive health services (family planning, pregnancy testing); STI screening and treatment; behavioral services (e.g., for ADHD); tuberculosis screening; and treatment for depression, headaches, acne, and upper respi- ratory infections. The school-based health centers provide clinical preventive services, acute injury and illness treatment, management of stable chronic condi- tions, mental health counseling, substance abuse intervention, health educa- tion, basic laboratory services, and basic prescriptions. They do not provide hospitalization, x-rays, nonroutine laboratory tests, dental services, vision care, or abortion counseling, nor do they prescribe contraceptives; patients are referred to other parts of the Denver Health system if these services are needed. Fully 77 percent of patients using the school-based health centers are Hispanic, and 53 percent have no insurance. Howard Brown’s Broadway Youth Center Howard Brown is a regional, federally qualified health organization in Chicago that provides an expansive network of health programs and services to the Chicago community. It has a diverse and qualified staff of licensed doctors, nurses, mental and other health practitioners, renowned research professionals, and prominent community leaders. The Broadway Youth Center is one of a number of programs offered by Howard Brown. It offers comprehensive services to people aged 12–24, including: • Drop-in services that offer a place to hang out and connect while providing computer and telephone access, a daily snack, hygiene supplies, showers, and materials on safe sex. • Daily health and education workshops. • Case managers available to help with everything from meeting basic needs to obtaining resources and skills to help with housing, job placement, and education. • Free drop-in, anonymous HIV testing and confidential STI screen- ing for chlamydia and gonorrhea, available daily, as well as medical treatment for those with symptoms of an STI. • Free drop-in medical services and health education for common health issues, including acute illness, family planning, and STI treatment. Referrals to primary care services are also made for those in need of ongoing care. • Free individual and group drop-in counseling to assist with such is-

228 ADOLESCENT HEALTH SERVICES sues as coming out, dating violence, substance use, and HIV status. Those seeking ongoing counseling can receive an initial assessment followed by an appropriate referral. • Social and support groups focused on various subpopulations (e.g., those who are transgender, college-aged, or HIV-positive) and rel- evant activities (e.g., creative expression, activism, legal rights). • Peer education and adult mentoring. • Research activities that explore various health issues and treatments. Arkansas Children’s Hospital’s Adolescent and Sports Medicine Center The Adolescent and Sports Medicine Center is part of the Arkansas Children’s Hospital system, which serves local residents of Little Rock as well as state residents. It is the only center in the region that provides health services focused on adolescents. The following services are offered by a multidisciplinary team: medical and wellness services, gynecology, sports medicine, athletic training, sports physical therapy, mental health services, nutrition counseling, diabetes treatment, substance abuse services, and treatment for eating disorders. The center also provides financial con- sulting, an in-house limited pharmacy, and laboratory services. Diagnosis and treatment of eating disorders are delivered offsite in a specialty clinic. Adolescents needing subspecialty services are referred to other parts of the Arkansas Children’s Hospital system. The center is funded mainly through a clinical contract with the University of Arkansas for Medical Sciences; ad- ditional funding is received from other partners that support the Arkansas Children’s Hospital and the center. The Adolescent and Sports Medicine Center has 12 outreach sites for its Sports Medicine PLUS program in local senior high and middle schools that serve as entry points for the full range of adolescent health services. The center operates a weekly consultation clinic in northwest Arkansas, as well as at two Job Corps facilities. It also works with other community partners, including a Community Health Coalition with a local high school, the local school board, Planned Parenthood, and the University of Arkansas for Medical Services. The center provides health services to those aged 12–21—65 percent female, 70 percent African American. It serves primarily low-income ado- lescents who are enrolled in the State Children’s Health Insurance Program (SCHIP), but also provides services for those within the Arkansas Children’s Hospital system, members of the local community, and those referred for consults and emergency room follow-up. The center offers unique features, including an electronic sign-in service to ease registration and remind all staff of the patients waiting to be seen

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 229 and a 24-hour Kids Care telephone resource staffed by registered nurses for all-hours advice on medical needs. The provision of sports medicine and physical therapy is well suited to an adolescent-specific health center. The offsite adolescent eating disorders clinic uses an interdisciplinary approach for diagnosis and treatment, and is the only adolescent-specific eating dis- orders clinic in the state of Arkansas. Partnership with the school district provides payment for the sports medicine program, while other services are covered by SCHIP. The center’s medical staff make up the Adolescent Division of the Department of Pediatrics and enjoy considerable autonomy in the center’s management and planning. The center’s policies, procedures, strategic planning, and monitoring are largely within the purview of the Arkansas Children’s Hospital administration, with consultation from the medical staff of the Adolescent Division. The hospital submits all outpatient billing and returns collections on physician and other professional charges to the Department of Pediatrics through a contractual agreement. Jetson Center for Youth Through a contract with the Louisiana State Office of Youth Develop- ment, the Louisiana State University (LSU) Health Sciences Center’s Juve- nile Justice Program provides multidisciplinary health services for youths in the state’s long-term secure juvenile facilities. The Jetson Center for Youth is one of these long-term secure juvenile sites. It serves primarily the southern portion of the state of Louisiana, including New Orleans and Baton Rouge, and provides medical, dental, psychiatric, and psychological services, as well as other specialty services, including neurology, orthope- dics, gastroenterology, audiology, radiology, and ophthalmology. The center also provides educational and vocational services. Many of the center’s services are available onsite; however, youths have access to all LSU health services offsite as well. The services are fully funded by the state. All poli- cies, procedures, protocols, billing, quality assurance, staff development, strategic planning, grant management, and utilization review and outcome monitoring are managed through the Office of Youth Development in part- nership with LSU. The Jetson Center for Youth provides health services to 150 to 200 males aged 12–21, 80 percent of whom are African American and most of whom come from low-income rural communities. The most common health issues for adolescents served by the center are mental disorders (40 percent of these adolescents have a serious mental health problem), STIs, behavioral problems, and bruises and broken bones and teeth due to physical encoun- ters. A multidisciplinary health care team delivers the center’s onsite health services. The team includes registered, licensed practical, and administrative nurses; psychologists; psychiatrists; social workers; pediatricians; an oph-

230 ADOLESCENT HEALTH SERVICES thalmologist; a dentist; a dental hygienist; and pediatric, physician assistant, and administrative personnel essential to the coordination of services. In addition to the onsite staff, there is access to other specialists, most notably an additional psychiatrist, who works offsite through telemedicine. This health team, employed by LSU and with several members available onsite at all times (24-hour nursing and on-call psychiatric/psychological staff), is eager to move from a correctional to a therapeutic model, particularly in dealing with serious mental illness, through ongoing planning, training, and evaluation with Office of Youth Development leadership. Mount Sinai Medical Center An adolescent health clinic associated with Mount Sinai Medical Cen- ter, established in 1968, is one of the largest and oldest examples of a free- standing health center that provides integrated, multidisciplinary services and also strives to help adolescents take responsibility for their own health. The center annually serves more than 10,000 youths (aged 12–22) in several sites, including one in East Harlem and two school-based health centers in other Manhattan neighborhoods (Sandmaier et al., 2007). About one- third of clients have public or private insurance, and the center helps young people enroll in such public insurance programs as Medicaid or SCHIP; even so, care is available to all patients without restriction. The center’s diverse and multiethnic staff operates as a collaborative team focusing on coordinated, comprehensive, and highly individualized care. It includes 6 adolescent medicine specialists; 20 clinical social workers; 3 health educa- tors; specialists in obstetrics/gynecology, mental and behavioral health, and nutrition; and nurse practitioners, physician assistants, and ambulatory care technicians (Sandmaier et al., 2007). The Mount Sinai adolescent health clinic is especially noteworthy for its emphasis on youth empowerment through intentional engagement with adolescents and partners in understanding and ownership of their health. The Youth Advisory Board, a peer education program called SPEEK (Sinai Peers Encouraging Empowerment through Knowledge), and skill-building components in both primary and specialty care programs all reflect the center’s focus on helping adolescents make healthy decisions and support- ing their overall growth through mentoring, tutoring, legal advocacy, and preparation for taking such key tests as the General Educational Develop- ment, a high school equivalency degree (Sandmaier et al., 2007). Erie Teen Health Center The mission of the Erie Teen Health Center in Chicago is “both simple and challenging: to provide comprehensive, integrated, teen-sensitive care,

IMPROVING SYSTEMS OF ADOLESCENT HEALTH SERVICES 231 focusing on helping adolescents to develop the strengths and skills that will allow them to become effective stewards of their own health” (Sandmaier et al., 2007, p. 12). The center serves approximately 2,200 adolescent patients per year, along with more than 500 babies and young children of patients. More than three-quarters of its clients are aged 18–21, and approximately 70 percent are Hispanic. The center has developed a nationally recognized group model of prenatal care—the Centering Pregnancy Program—that includes physician examinations, consultation with a nurse midwife, group discussion sessions, self-assessment instruments, and community support within the group. Assessments of program effectiveness are based on patient satisfaction surveys, as well as data on the center’s reproductive health ser- vices. Those data show that 93 percent of the center’s adolescent patients used birth control over the past 12 months without becoming pregnant, and that 86 percent of clients with STIs had been reached and treated by the center within 14 days of testing, a rate that exceeds the state goal of 73 percent (Sandmaier et al., 2007). SUMMARY Developing an improved health system for adolescents will require at- tention to several fundamental goals: • Placing a greater emphasis on and enhancing the capacity of pri- mary care providers to offer high-quality screening, assessment, health management, referral, and care management of specialty services for this population, especially for behaviorally based health problems. • Coordinating behavioral, reproductive, mental health, and dental services in practice and community settings. • Incorporating health promotion, disease prevention, and youth development throughout the health system, in coordination with such services in the community. • Ensuring consent and confidentiality for adolescents seeking care. Strengthening these features of the settings in which health services for adolescents are provided will require explicit attention to the ways in which service environments are structured and the training and clinical experiences of health care providers. It will also require comprehensive integration of electronic health records and electronic tools for commu- nicating with adolescents, and the development of sustained partnerships with sectors such as education, the media, and the entertainment industry that are important parts of the adolescent culture. It will be necessary to introduce new incentives and assessment efforts, derived from population

232 ADOLESCENT HEALTH SERVICES health research, aimed at realigning the health environment, provider ser- vices, and information resources, probably in regional centers with varying levels of expertise, to achieve a more explicit focus on accomplishing the national health objectives for adolescents outlined in Healthy People 2010 (as described in detail in Chapter 2). At the very least, primary care provid- ers who care for large numbers of adolescents will need to organize sup- port for comprehensive screening and monitoring initiatives that are likely to require electronic databases and trained staff. These initiatives should build upon the strengths of the existing diversity of health service settings while also attempting to move those settings toward greater coordination and a set of common objectives and screening and assessment methods that can enrich the quality of adolescent health services and ultimately lead to better health outcomes. These initiatives should also focus on the context of health services by building upon lessons learned from the delivery of services to marginalized and special subpopulations of adolescents with respect to those operational features and processes that foster adolescents’ engagement with providers. Emphasis should be placed on improving the skills and capacity of all health personnel in primary care settings—not solely physicians—to serve the needs of all adolescents. This chapter has proposed several approaches to improving health sys- tems for adolescents to make services accessible, acceptable, appropriate, effective, and equitable. Such improvements are particularly important to support healthy development for those adolescents who are more vulner- able to poor health or unhealthful habits and risky behavior because of their demographic characteristics or other circumstances. Limited evidence is available on health outcomes associated with alternative service strate- gies. Therefore, the committee has attempted to highlight areas in which research could yield knowledge that would support quality improvements in the organization and delivery of health services for adolescents. For ex- ample, the evidentiary base currently does not support the formulation of performance standards and operational criteria that would make it possible to compare the strengths and limitations of different service delivery models in meeting the needs of all adolescents, as well as specific subpopulations. In particular, few evaluations provide insight into the validity and reliability of screening tools and counseling techniques for the most vulnerable groups of adolescents. Efforts to improve the knowledge base on the provision of services to these adolescents should therefore be a major priority in efforts to improve health services and the quality of care for adolescents.

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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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