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Introduction

To view the lives of adolescents through the lens of health care is to see a paradox: while most adolescents at this stage of life are thriving, they are also experiencing their moment of greatest vulnerability in terms of susceptibility to impulsive and risky behaviors involving sex, violence, substance use, and driving. It is during adolescence that lifelong behaviors are set in such areas as diet and exercise; sexual conduct; practices related to oral health, smoking, drinking, and the use of legal and illegal substances; and peer interactions that can enhance or discourage injuries. And while much of the health care system is focused on addressing problems that derive predominantly from biological causes, the health concerns of adolescents generally involve behavioral practices. Adolescence thus is a time of tremendous opportunities, but there are daunting challenges and complexities inherent in helping young people develop practices and relationships that they can carry into their adult lives.

The most difficult issues many adolescents confront in their daily lives—from questions about sexuality and experimentation with drugs and alcohol to emotional problems, obesity, or anorexia—are or could easily turn into health problems that can persist throughout their adult lives. And the adolescents who are frequently most disconnected from routine health care services—those who lack insurance or who lack parental guidance and family support—are frequently the ones who are at greatest risk for multiple and chronic health problems.

Consequently, as this incomplete list of issues suggests, those who



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Challenges in Adolescent Health Care: Workshop Report 1 Introduction To view the lives of adolescents through the lens of health care is to see a paradox: while most adolescents at this stage of life are thriving, they are also experiencing their moment of greatest vulnerability in terms of susceptibility to impulsive and risky behaviors involving sex, violence, substance use, and driving. It is during adolescence that lifelong behaviors are set in such areas as diet and exercise; sexual conduct; practices related to oral health, smoking, drinking, and the use of legal and illegal substances; and peer interactions that can enhance or discourage injuries. And while much of the health care system is focused on addressing problems that derive predominantly from biological causes, the health concerns of adolescents generally involve behavioral practices. Adolescence thus is a time of tremendous opportunities, but there are daunting challenges and complexities inherent in helping young people develop practices and relationships that they can carry into their adult lives. The most difficult issues many adolescents confront in their daily lives—from questions about sexuality and experimentation with drugs and alcohol to emotional problems, obesity, or anorexia—are or could easily turn into health problems that can persist throughout their adult lives. And the adolescents who are frequently most disconnected from routine health care services—those who lack insurance or who lack parental guidance and family support—are frequently the ones who are at greatest risk for multiple and chronic health problems. Consequently, as this incomplete list of issues suggests, those who

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Challenges in Adolescent Health Care: Workshop Report are responsible for delivering health care to adolescents have to resolve this paradox. They need to address the health conditions that require immediate attention while also preparing young people to adopt practices that can help improve their future health status and prevent unhealthy behaviors. They need to recruit adolescents who are difficult to reach and engage them in health care settings that often are not tailored to the sensitivities or concerns of adolescents. And as this list also suggests, health care providers need to be sensitive to the interactions between adolescents’ health and their life circumstances, developing strategies that can incorporate health care in a broad array of settings—schools, neighborhoods, community centers, and social services—that interact with vulnerable adolescents and their families. For all adolescents, health and health care can be complicated by developmental changes, questions about confidentiality, relationships with families and peers, and other factors specific to this stage of life. For especially vulnerable populations, such as adolescents who are disabled, homeless, incarcerated, in foster care, or who live in poverty, health issues can be far more complicated. The needs of adolescents vary by gender, race and ethnicity, and other factors. Many of the challenges of adolescence are not medical but reflect larger social issues, such as poverty, crime, and the prevalence of violence. Nevertheless, lack of comprehensive health coverage, severely dysfunctional families, and the lack of many supports that other adolescents may take for granted can mean disconnection from the health care system and serious deficiencies in the care these young people receive. Insufficient health care affects not just the health of individual adolescents as they are growing up, but their lifelong health status as well. The Committee on Adolescent Health Care Services and Models of Care for Treatment, Prevention, and Healthy Development was formed by the National Academies in May 2006, with funding from The Atlantic Philanthropies, to study adolescent health care services in the United States and highlight critical health care needs, promising service models, and components of care that may strengthen and improve health care services, settings, and systems for adolescents and contribute to healthy adolescent development. Committee members brought to this task expertise in the areas of adolescent health, general pediatrics, health care services, adolescent development, school-based health services, health care finance, mental health, alcohol, tobacco, and drug use, sexual health, oral health, nursing, public policy, statistics and epidemiology, preventive medicine, program evaluation, injury research, law, and immigrant and minority adolescents. The committee was charged with exploring the following questions:

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Challenges in Adolescent Health Care: Workshop Report What does the evidence base suggest constitutes high-quality health care and health promotion services for adolescent populations? What features do parents, community leaders, and adolescents themselves perceive to be essential components of quality health care for adolescent populations? What are the strengths and limitations of different service models (such as standard care systems, special population centers, comprehensive health care centers, and others) in addressing adolescent health care needs? What lessons have been learned in efforts to promote linkages and integration among adolescent health care, health promotion, and youth development services? What service models show significant promise in offering primary care as well as prevention, treatment, and health promotion services for adolescents with special needs and for selected adolescent populations (such as those in foster care or juvenile detention)? What organizational settings, finance strategies, and communication technologies promote engagement with, access to, and use of health care services by adolescents? Do important differences occur in the use and outcomes of different service models in selected adolescent populations on the basis of such characteristics as social class, urbanicity, ethnicity, gender, sexual orientation, age, special needs, or risk status? What kinds of training programs for health care providers are necessary to improve the quality of health care for adolescent populations? What innovative strategies have been developed to address such concerns as decision making, privacy, confidentiality, consent, and parental notification in adolescent health care settings? What policies, mechanisms, and contexts promote high-quality health care services for adolescents? What barriers impede the optimal provision of adolescent health care services? What strategies help adolescents to engage with and navigate the health care system, especially those at significant risk for health disorders in such areas as sexual and reproductive health, substance use, mental health, violence, and diet? The committee planned two public workshops to inform its members about several issues that come under this broad charge and to supplement a literature review and research analysis. The first of these was a community forum held in November 2006, designed to elicit the views of a diverse group of health care providers and young people who use and provide adolescent health care, with the goal of revealing gaps in current mechanisms for delivering health care to adolescents, with a particular

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Challenges in Adolescent Health Care: Workshop Report focus on vulnerable groups. The second was a research workshop held in January 2007, which focused on the available evidence regarding the organization and delivery of adolescent health care. Although both sessions addressed many issues that affect the general adolescent population, each had a particular focus on the needs of special adolescent populations, such as adolescents in foster care or the juvenile justice system, adolescents from minority racial or ethnic populations, homeless or disabled adolescents, and others. See Appendix A and Appendix B for the agendas and participant lists for each session. This report summarizes the presentations and discussion that took place at each of these events. It is intended to provide a discussion of the ideas expressed by workshop presenters and participants—not a complete review of relevant literature. The community forum was designed to address specific questions: What are the strengths of current adolescent health care services and settings? What are their weaknesses? Where are there opportunities to enhance and improve adolescent health care services and settings? What are the threats to them? What vulnerable populations are not particularly well served through current health care services and settings? What lessons have been learned in efforts to promote linkages and integration among adolescent health care, health promotion, and youth development services? The community forum allowed the committee to learn from the experiences of selected populations of vulnerable adolescents, voiced both by young people themselves and by adults who work with them. It also provided a look at the structures through which health care is provided and the perspectives of providers and funders of health care for adolescents, especially those who are in difficult circumstances. Opportunities for discussion throughout the day allowed committee members to query participants and identify themes in the presentations and discussions, and time was set aside at the end of the day for participants to present statements about issues relevant to the committee’s task. A key goal for the community forum was to allow views to be aired that might not easily find a place in more traditional, academic modes of inquiry. The second event—the research workshop—provided an opportunity to consider many of the issues raised in the community forum discussions in the context of data about vulnerable adolescent populations and the care available to them. The research workshop targeted five goals:

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Challenges in Adolescent Health Care: Workshop Report Identify current models of adolescent health care delivery. Examine how measures of quality (as defined by the Institute of Medicine and adapted to adolescents) apply to adolescent health care delivery. Explore the evidence base for the quality of health care and different types of health care systems and the research needs for measuring this quality now and in the future. Examine the methods through which health care can and should be delivered to special populations of adolescents now and in the future. Identify research needs and gaps in models, quality, and delivery of adolescent health care. The two workshops together provided a look at the issues and the challenges from a variety of perspectives. This report provides an integrated overview of the information and ideas that were presented and discussed at both. It is organized around the themes and questions that were presented and discussed, and it is not intended as a comprehensive review of issues related to the delivery of health care to adolescents, or a comprehensive summary of available data on adolescent health issues. The committee hopes that the ideas and information presented in the report will be helpful to the variety of stakeholders with a particular interest in health care for adolescents.