Access to appropriate health care services is important for adolescents, both to ensure their well-being today, as they experience the bumps and stresses of adolescent life, and to ensure their well-being for a lifetime by addressing habits that impact their long-term health, such as diet, exercise, and substance use (Brindis et al., 2002; National Research Council and Institute of Medicine, 2009; Patton et al., 2016). Yet adolescents—particularly ethnic and racial minority adolescents—face a variety of barriers to accessing health care (Alegría et al., 2016; Costello et al., 2014; Cummings et al., 2014; Lau et al., 2012). Additionally, many of the health issues adolescents confront are rooted in the social determinants of health and driven by underlying social and economic inequalities (Brindis et al., 2005; Philbin et al., 2014; Richardson et al., 2017; Tebb et al., 2018).
These barriers are troubling given our new understanding of how the brain, body, and environment interact during adolescence (see Chapters 2 and 3). The period of adolescence presents an opportunity for the health care system to support the optimal growth and development of all adolescents. In this distinct period of development, young people are strengthening the abstract reasoning and executive function skills that help them to set long-term goals and make rational decisions. At the same time, their heightened neurobiological flexibility and resilience make them more amenable to interventions that can maintain or improve their developmental trajectories. But this increased flexibility also makes adolescents more vulnerable to harmful or unhealthy influences that can set them on less positive paths. The health care system can work to support adolescents’ growth
and potential through programs, policies, and practices specifically aimed at young people.
This chapter sets out a vision for financing and delivering adolescent-friendly health services, an essential condition for every adolescent to flourish (Mazur et al., 2018). It then discusses some of the critical components of adolescent-friendly services: access to services, including sexual and reproductive health care and behavioral health care; confidentiality and parental consent; a workforce trained in adolescent care; the provision of care in nontraditional settings, including school-based health centers and through eHealth; and the creation of safe environments. The chapter concludes with a blueprint for achieving adolescent-friendly services and system-level policies to improve adolescent health.
Adolescents are distinct from both children and adults when it comes to health care. In general, they are inexperienced in navigating the health care system independently and are especially concerned that their health needs and the services they receive remain confidential (Britto et al., 2010; Copen et al., 2016; Grilo et al., 2019). Moreover, adolescents are also more likely than adults to engage in risk-taking behaviors that could have both short- and long-term effects on their health (Patton et al., 2016). These distinct characteristics require health care delivery approaches tailored to adolescents’ developmental needs. When such developmentally appropriate care is not available, youth have been shown to forego care and become disengaged with the health care system (Ford, 1999; Lehrer et al., 2007).
Developmentally appropriate changes to provider practices and innovative care delivery systems can help adolescents become more engaged with their care and achieve better outcomes. This section discusses the health-service wants and needs of adolescents and lays out the characteristics of adolescent-friendly health services. The goal of such services is to ensure the health and well-being of all adolescents, through integrated, comprehensive health services that prepare youth for the distinct physical, cognitive, and social changes that take place during adolescence, ready them to navigate the health system independently, and provide services that are culturally informed and attentive to the needs of all youth (see Box 7-1).
Characteristics of Adolescent-Friendly Health Services
To design services to meet the needs of adolescents, we must first understand what adolescents, as consumers of health services, expect and need from their primary care providers (Daley et al., 2017). A meta-analysis
of 12 qualitative studies found that adolescents have five overarching desires for their interactions with health care providers: (1) to be engaged in conversations, not lectures; (2) to have their privacy and confidentiality respected; (3) to be accepted; (4) to be treated with respect, competence, and professionalism; and (5) to be offered a trusted relationship with their providers (Daley et al., 2017). Moreover, adolescents place greater valence on the characteristics of the health care provider than any other group does, and they wish to feel welcomed, attended to, and understood (Ambresin et al., 2013; Blum et al., 1996; Daley et al., 2017; Ginsburg et al., 2002a; Mazur et al., 2018). Adolescents may find health services unfriendly if they are not accessible (too far away or expensive) or not accepting of them, for example if they fear being judged or fear breeches of confidentiality (World Health Organization, 2012). Understanding what adolescents themselves want out of the health care system is crucial for developing adolescent-friendly health services.
Comprehensive, integrated, and coordinated services represent a critical feature of adolescent-friendly services.
Comprehensive health care aims to take into account the entirety of a person’s needs, from medical to social. The power of social determinants of health, as well as the social and cultural context that young people live in, require a blending of services beyond those traditionally encompassed in the health sector, such as education, social and economic development, and other family and community supports.
Integrated services address a patient’s physical and behavioral health concerns. As adolescent health—and adolescence itself—has been reconceptualized over the past decades, and as new research in neurobiological development emerges, the necessity of integrating physical and mental health services has become increasingly apparent and important. Integration between physical and behavioral health providers becomes more pressing as the number of adolescents with mental or behavioral health issues grows (see “Behavioral Health Care” below). An integrated system aims to
promote communication, collaboration, and coordination between physical health and mental health care providers, youth, and their families (National Alliance on Mental Illness, 2011). Ideally, both primary care and behavioral care are established within the same setting or co-located.
Coordinated services seek to break down silos in health care by synchronizing the delivery of care between multiple providers and specialists.1 Coordinated care aims both to improve health outcomes by breaking down silos between disparate providers and to reduce health care costs by preventing duplication in tests and procedures (New England Journal of Medicine Catalyst, 2018). Thus, having highly coordinated services lessens the burden on adolescents to know exactly which services they need so that they show up at the “right” service door. For young people who often perceive their health care needs as interrelated (Brown et al., 2007; Gray et al., 2005; Manganello, 2008), and are new to navigating the health system on their own, integrated, coordinated and comprehensive services may be especially helpful. Moreover, coordination and continuity of services are especially important for adolescents with special health care needs, including physical health, mental health, and substance abuse treatment, but all adolescents need support in transitioning between systems of care (e.g., from pediatrics or primary care to internal medicine or obstetrics and gynecology). In addition, coordination within a system can decrease fragmentation and maximize available resources at the local, state, and federal levels.
The holistic approach to assessment and care is well-suited to addressing the health behaviors, concerns, and problems of young people, because the risks and vulnerabilities they face are multifaceted and highly interrelated. Providers need to be attuned to the whole adolescent and not just to the presenting issue, as adolescents often experience a range of health needs at the same time. For example, among U.S. high school students, of those whose last sexual intercourse was unprotected, 43.5 percent reported persistent sadness, 41.5 percent reported suicidal thoughts and plans, and 45.9 percent reported either binge drinking or drinking while driving (Fox et al., 2010c). This challenges us to think about young people’s physical health, sexual and reproductive health, and emotional well-being in a highly connected and coordinated way.
Adolescent-friendly health service models seek to provide services that are comprehensive, accessible, confidential, developmentally appropriate,
1 Coordinated care has four elements: (1) patients have ready access to a range of health care services and providers, (2) providers communicate effectively and execute effective care plan transitions, (3) the patient’s total health needs are the focus, and (4) information is presented to patients clearly and simply to promote understanding (New England Journal of Medicine Catalyst, 2018).
and equitable (Daley et al., 2017; Diaz et al., 2004; Fox et al., 2010a; Ginsburg et al., 2002b; Mt. Sinai Adolescent Health Center, 2017; Sadler and Daley, 2002; Tylee et al., 2007; World Health Organization, 2003). These models seek to remove barriers to care and improve engagement in the health system among young people. They have been adopted in a number of health care settings; see Box 7-2. Several studies and frameworks have been developed to conceptualize youth-friendly health care services (Ambresin et al., 2013; Huppert and Adams Hillard, 2003; Mazur et al., 2018; Mount Sinai Adolescent Health Center, 2017; World Health Organization, 2012), but they all share some common characteristics. Adolescent-friendly health services are
- accessible and convenient (e.g., have convenient opening hours and youth-only hours; allow ease of scheduling appointments and follow-ups);
- affordable (without significant financial barriers, regardless of insurance coverage);
- appropriate (geared to their stage of development and needs);
- equitable (welcome to all, regardless of race and ethnicity, sexual orientation, or gender identity);
- comprehensive (addressing the full range of adolescent health concerns, including appropriate health education);
- safe and respectful (delivered in a fitting environment, such as a “safe space” where adolescents can raise questions without stigma or judgment); and
- coordinated and integrated (providing continuity with the same provider, and meeting all of the adolescent’s needs).
Although the evidence on the relationship between providing youth-friendly services on health outcomes is still emerging, the existing evidence suggests that the barriers to access, use, and acceptability that young people face in the health system need to be removed (Santa Maria et al, 2017; Tylee et al., 2007).
Financing Health Care for All Adolescents
The Affordable Care Act (ACA) included several provisions designed to improve access to and the receipt of preventive health services for ado-
lescents, addressing both public and private insurance.2 It allowed states to expand Medicaid up to 133 percent of the federal poverty level and to create a health insurance exchange (or “Marketplace”) to offer financial assistance for insurance to low-income individuals and families. In addition, the ACA required that adolescents be enrolled in either Medicaid or a private health insurance program with access to an annual preventive health
2 The ACA also included initiatives benefitting adolescents, including funding for school-based health centers, teen pregnancy preventive programs, and community health centers.
visit and allowed adolescents to stay on their parents’ health insurance program until age 26, increasing stability during major points of life transition.
The ACA also required most private health plans to cover certain preventive services without cost to the patient. Covered preventive services for adolescents that require no copayments include annual wellness visits, evidence-based screening and counseling for mental health (i.e., depression, suicide) and substance use (i.e., alcohol, tobacco, and illicit drugs), and access to contraceptive services and methods. These preventive services were part of the 10 “Essential Health Benefits” offered in health plans through
state health insurance exchanges. Preventive health care services provide a vital opportunity to help adolescents in establishing and maintaining a healthy lifestyle and an increasingly independent role in navigating the health care system, although parents often continue to play a substantial role in their enrollment in health insurance and accessing care.
While evidence suggests that the ACA has been effective at increasing coverage and receipt of services of adolescents (Adams et al., 2018), as of 2014, about 20 percent of young people ages 18 to 24 nationwide lacked health insurance coverage, and these rates vary widely across states and by race and ethnicity, LGBTQ status, homelessness, socioeconomic status, and ability status3 (Okoro et al., 2017; Centers for Disease Control and Prevention, 2017). While health insurance coverage matters, with full-year publicly insured adolescents receiving wellness visits at higher rates, insurance in itself is not sufficient, as less than half of insured adolescents received wellness care. These findings reinforce the need for greater efforts to engage adolescents in wellness care and improve provider delivery of preventive care, particularly for underserved groups (Adams et al., 2018).
Troublingly, recent legislative efforts have rolled back some aspects of the ACA. In 2018, as part of the American Tax Cuts and Jobs Act, Congress passed legislation removing the ACA’s insurance coverage mandate, effective January 2019. This potentially threatens the gains in health care access achieved under the ACA. Further, Congress reduced funding for community outreach regarding purchasing insurance on the exchanges and reduced the period of time during which families can enroll or re-enroll in health coverage (from a 3-month period to 6 weeks).
As discussed in Chapter 2, developmental changes in the brain’s limbic regions during adolescence contribute to novelty seeking and the intensification of emotional and social learning. As adolescents become more autonomous, shape their identity, and establish new relationships with peers and romantic partners, many start engaging in sexual behaviors. Sexual desire and behavior represent normative features of adolescent development that have the potential to foster the building of healthy relationships and enhance the happiness, psychological development, and well-being of youth. Parents, caretakers, systems—particularly the health
3 For disparities by race and ethnicity, see Alexandre et al. (2009); Avila and Bramlett (2013); Brindis et al. (2005); Costello et al. (2014); and Cummings and Druss (2011). For disparities by LGBTQ status, see Russell et al. (2012). For disparities affecting youth experiencing homelessness, see Baer et al. (2003) and Edidin et al. (2012). For disparities by socioeconomic status, see English et al. (2014). For disparities by ability status, see Green et al. (2013); National Conference of State Legislatures (2011); and Vo and Park (2008).
system—and adolescents themselves can contribute to environments in which adolescent sexuality is positive and health-promoting and adverse risks can be minimized.
Recent advances in neuroimaging illuminate the neurocognitive mechanisms between response inhibition and adolescent decision making related to sexual behavior. These studies suggest the relevance of the right prefrontal cortex in response inhibition among adolescents and an association between adolescent risky sex and blood oxygen level dependent response in the inferior frontal gyrus, consistent with prior studies of executive control (Feldstein Ewing et al., 2015; Goldenberg et al., 2017; Hansen et al., 2018). According to the authors, “This emerging research, thus, begins to explain why many adolescents may be aware of the risks associated with unprotected sex and the protective efficacy of condoms, yet often do not translate this knowledge into prudent sexual decision making.” Moreover, decision making related to sexual behavior is shaped by adolescents’ desire for social status or intimacy and young people may choose to engage in risky behaviors in order to gain these immediate benefits (see, e.g., Rivers et al., 2008).
Engaging in sexual behavior is a normative part of adolescent development, and the health system plays a critical role in ensuring that adolescents receive the sexual and reproductive health care they need. Moreover, our growing understanding of the neurobiological basis of adolescent sexual decision making can inform the health system’s approach to providing appropriate sexual and reproductive health care to adolescents and young adults. The next two sections focus on two aspects of the negative consequences of unprotected sexual experiences in adolescence: unintended pregnancy and sexually transmitted infections. That is followed by a discussion of the role the health system can play in reducing these risks.
A major focus of adolescent health policy for the past decades has been, and remains, lowering the rates of unintended pregnancies and teenage births. Teen pregnancy and teen births commonly have negative consequences for adolescents. Though many teen mothers are disadvantaged before becoming parents, early parenthood is associated with lifelong high poverty, low educational achievement, and lower behavioral well-being among their children (Manlove et al., 2015). Social determinants associated with teen childbearing include low parental educational attainment and limited education and employment opportunities (Romero et al., 2016). These determinants are far more common in communities with higher proportions of racial and ethnic minorities (Romero et al., 2016).
Fortunately, teen pregnancies and birth rates have been declining since the late 1990s (Finer and Zolna, 2014), especially between 2007 and
2012. Several researchers identify improvements in contraceptive use as the proximal determinants of the significant decline in adolescent pregnancies and birth rates that occurred between 2007 and 2012 (Finer and Zolna, 2014; Lindberg et al., 2016). In 2015 teen birth rates reached a historic low—22.3 births per 1,000 adolescents ages 15 through 19 (Martin et al., 2018; Romero et al., 2017).
Despite this decline in adolescent pregnancies and birth rates, it is generally recognized that the rates are still far too high (Hall et al., 2016; Santelli, 2008; Schalet et al., 2014; Singh, 2000; Singh et al., 2001). The actual number of pregnancies for 10–14-year-olds (614,000 in 2014), a rate of 0.45 in 1,000, is considered exceptionally high, especially compared to other advanced industrial nations (Sedgh et al., 2015). Furthermore, birth rates among those ages 15 to 19 are approximately two times higher for Latinx, non-Latinx black, and American Indian and Alaska Native (AIAN) adolescents compared with non-Latinx White and Asian teens in the United States (Martin et al., 2018). In addition, disparities by geography persist: from 2007 to 2015, the teen birth rate among 15–19-year-olds declined by 50 percent in large urban counties, 44 percent in medium and small urban counties, and only 37 percent in rural counties (Hamilton et al., 2016).
Sexually Transmitted Infection (STI)
Levels of STI diagnosis in the United States are high, with an estimated 20 million new cases identified each year. Adolescents and young adults (ages 15 to 24) acquire one-half of all new STIs, including one-quarter of all new cases of HIV, while adolescents and young adult women have the highest rates of cervical human papillomavirus (HPV) (Forhan et al., 2009; Santa Maria et al., 2017; Satterwhite et al., 2013).
HPV is the most common sexually transmitted viral infection and the primary cause of cervical cancer as well as other anogenital and oropharyngeal cancers (Ford, 2011).4 HPV prevalence reached 24.5 percent among females ages 14 to 19, and 44.8 percent among women ages 20 to 24 in 2007 (Dunne et al., 2007). Racial disparities exist in HPV infection rates as well as in cervical cancer and mortality rates. Thirty-five percent of non-Latinx Black women ages 18 to 25 are HPV-infected compared with 25 percent of their non-Latinx White peers (Busen et al., 2016). This is concerning since non-Latinx Black women experience higher mortality rates than any other racial or ethnic group in the United States.
4 HPV in males is also associated with anogenital and oropharyngeal cancers.
Misinformation and risk factors may contribute to HPV disparities in adolescents. While a vaccine is available to protect against some of the most common strains of HPV, many young women are misinformed about HPV and do not consider themselves at risk, particularly migrant youth and non-English speakers (Ford, 2011). Despite evidence that supports use of the vaccine, rates of HPV vaccination among 13–17-year-olds remain sub-optimal but continue to rise steadily and reached 60 percent for the first time, in 2016 (Walker et al., 2017). Furthermore, the gap between vaccination rates for boys as compared to girls is beginning to close (Walker et al., 2017).
However, significant disparities in vaccination rates based on socioeconomic status (SES) and geography persist. In 2016, HPV vaccine coverage varied considerably by income, with higher rates among families living below the poverty line (Walker et al., 2017). Differences between urban and non-urban youth were even more dramatic (Walker et al., 2017). These rates likely reflect differences in adolescent health care delivery, the emphasis of immunization programs on adolescent vaccination activities, and the prevalence of factors associated with lower vaccination coverage, such as contact with the medical system and provider failure to document risky health behaviors (Walker et al., 2017).
HIV and AIDS
Approximately 60,300 youth ages 13 to 24 were living with HIV in the United States at the end of 2015, with an estimated 51 percent living with undiagnosed HIV (Centers for Disease Control and Prevention, 2018a).5 The HIV epidemic in the United States disproportionately affects vulnerable youth and minority men who have sex with men (MSM) populations (Prejean et al., 2011). The Centers for Disease Control and Prevention (CDC HIV youth index) reports that in 2016, 8,451 youth ages 13 to 24 received an HIV diagnosis, with the highest diagnosis rates among young people ages 20 to 24 (80%) and young gay and bisexual men (81%) (Centers for Disease Control and Prevention, 2018a). Furthermore, a majority (54%) of new infections among young gay and bisexual males are in Blacks while Latinos accounted for 25 percent (Centers for Disease Control and Prevention, 2018a). Normative adolescent risk-taking behaviors do not sufficiently explain the far higher rates of HIV infection among Black young MSM.
Among the youth diagnosed and living with HIV, in 2014, less than one-half received HIV medical care (41%), were retained in care (31%),
5 Rates of HIV among adolescents may continue to increase in connection with the ongoing opioid epidemic, given the risk of contracting blood-borne infections through injecting drug use (Van Handle et al., 2016; Peters et al., 2016; Zibell et al., 2018).
and had a suppressed viral load (27%) (Centers for Disease Control and Prevention, 2018a).6 To benefit from antiretroviral therapy and suppress viral load, those with HIV must successfully link to—and remain connected to—health care to prevent disease progression and HIV transmission (Eisinger et al., 2019). While adult studies suggest that approximately 75 percent of newly diagnosed adults are linked to care within 1 year (Zanoni and Mayer, 2014), studies of adolescents and young adults show a much greater range with some reporting alarmingly low rates, ranging from between 29 percent and 73 percent within the first year of diagnosis (Torian et al., 2008; Craw et al., 2008; Molitor, 2006; Olatosi, 2009). Additionally, younger patients (ages 18 to 24) are significantly less likely to be retained in care than adults (American Academy of Pediatrics, 2002). The high cost ($1,100 to $3,300 a month) for pre-exposure prophylaxis may also contribute to these disparities (Pace et al., 2013).
A combination approach to HIV prevention, which combines evidence-based behavioral, structural, and biomedical prevention strategies (Coates et al., 2008), is recognized as one of the best approaches for reducing risky behavior and decreasing contraction of HIV and other sexually transmitted infections (Marshall and Woods, 2010). Further research on the implementation of these prevention interventions in vulnerable youth is essential to identify psychosocially, developmentally, and culturally relevant behavioral interventions with on-the-ground applicability among high-risk youth.
Sexual and Reproductive Health Care Services
Despite the great need among adolescents for sexual and reproductive health care services, particularly for youth of color and LGBTQ youth, in 2015 one in four sexually experienced adolescent females and one in three adolescent males (ages 15 to 19) had not received a reproductive health service (Romero et al., 2017). In the United States, the gap between age of sexual debut and receipt of sexual and reproductive health services is much greater than in other countries (Hock-Long et al., 2003).
Adolescents may face multiple barriers to accessing quality sexual and reproductive health care services, and confidentiality is chief among them (see “Confidentiality and Parental Consent Requirements,” below, for a discussion of the importance of privacy in adolescent health care). The barriers to adequate sexual and reproductive health care can be particularly high for LGBTQ adolescents, who face elevated sexual health risks and underutilize routine reproductive health care (Charlton et al., 2001). For the many who may find it difficult to share their sexual identities with
their health care providers, there is often a poor therapeutic alliance, lack of appropriate health-related education, and inadequate interventions to prevent STIs (Hafeez, 2017).
One way to increase access to sexual and reproductive health services for adolescents is to make such care available across a variety of settings (Santa Maria et al., 2017). Adolescents use health care services for a range of needs—sickness, sports physicals, immunizations, and emergency care—all of which provide opportunities to offer sexual and reproductive health care (Santa Maria et al., 2017). For instance, every year 15 million adolescents use emergency rooms for care. Compared to non-ER users, they are at substantially high risk for pregnancy (Chernick at al., 2015). Chernick and colleagues (2015) have suggested that sexual and reproductive health care services be provided in the emergency room.
A 2016 summit held by ETR on adolescent brain development and sexual and reproductive health produced three key messages: “(1) programs and theories that focus on teens must address developmental changes including how social, emotional, and cognitive processing influence adolescent decision making; (2) relationships are a fundamental context for adolescent sexual health; and (3) multiple support systems are essential to scaffold youth through positive growth and development”(ETR Associates, 2016, p. 1).7 The summit recommendations include the need to adopt measures relevant to sexual health in developmental neuroscience research; the need to imbed the understanding of adolescent development and neurobiology in sexual and reproductive health program development and implementation, training and technical assistance; and the need for research and funding mechanisms to be reflective of emerging understandings.
Recent research has helped to identify existing behavioral health issues in adolescent populations, including the understanding of risk factors and the implications of trauma and stress on brain development, areas of genetic susceptibility, the protective factors and interventions that can help youth, and the patterns of help-seeking. The subsequent section discusses five behavioral and mental health disorders of particular concern to adolescents—suicide, depression, anxiety, substance use disorder, and disordered eating—and the ways in which the health system can better serve adolescents experiencing these conditions.
Suicide is the second leading cause of death among people ages 10 to 34 in the United States (National Institute of Mental Health, 2018). Reports of suicide risk, based on the Youth Risk Behavior Survey, state that 18 percent of high school students seriously contemplated attempting suicide in the past year and 30 percent report feeling “sad or hopeless almost every day for 2 or more weeks in a row so that they stopped doing some usual activities” during the past 12 months (Office of Adolescent Health, 2017). Studies also suggest that suicide ideation8 intensifies between the ages of 12 and 17, with almost two-thirds of adolescents moving from ideation to planning and more than three-fourths from ideation to attempt during the first year of onset of ideation (Nock et al., 2013).
Consistent with several decades of prior research on community and regional samples, the 2015 Youth Risk Behavior Survey data also show higher risk for suicidal thoughts and behaviors among sexual minority youth. Greater than 40 percent of LGB students have seriously considered suicide, and 29 percent report suicidal behavior during the past 12 months (Kann et al., 2016). Although to date there are no nationally representative data on suicide risk among transgender youth, a recent representative study of California students showed that the prevalence of self-reported suicidal ideation was nearly two times higher for transgender students compared to the general student population (Perez-Brumer et al., 2017).
The risk for suicidal behaviors among adolescents may be partly attributed to neurobiological mechanisms. Multiple studies (Brent and Melhem, 2008; Voracek and Loibl, 2007; Ruderfer et al., 2019) suggest that suicidal behavior can be genetically inherited, and heritability (i.e., the extent to which a characteristic is determined by genetic rather than environmental factors) of suicidal behaviors ranges from 30 percent to 55 percent (Sokolowski et al., 2015).
Of course, environment and context also play a role in suicidal risk, particularly the quality of familial relationships. Adolescents with a history of suicide attempts rated their maternal and paternal attachment significantly lower than those with no history of suicide and less adaptable and cohesive (Sheftall et al., 2013). A review conducted by Pelkonen et al. (2011) revealed that mental disorders and high levels of familial distress are major risk factors for youth suicide. Unique to the adolescent developmental stage, high levels of emotional reactivity and engagement in risk-taking behaviors as adolescents strive for autonomy and rely less on parental support could manifest in suicidal behaviors (Pelkonen et al., 2011). The dual effects of autonomy-seeking behavior and turbulent family support may
8 Suicide ideation includes self-reported thoughts of suicide and a preoccupation with suicide.
even intensify the risk for suicide. Furthermore, feelings of social disconnectedness could increase risk of suicidal behavior (Sheftall et al., 2013).
Many interventions have been tested to reduce suicidal risk and mental health problems among youth. The literature in this area highlights a number of promising strategies, including those incorporating mindfulness (Fung et al., 2018), family involvement (Prado et al., 2013), and motivational enhancement and cognitive behavioral therapy (Belur et al., 2014). For example, Familias Unidas is an evidence-based preventive intervention that focuses on parent-adolescent relationships and has been very effective in reducing Latinx adolescents’ internalizing and externalizing disorders,9 substance use, and risky sexual practices (Pantin et al., 2009; Perrino et al., 2014; Prado et al., 2013; Prado and Pantin, 2011). Further, the most effective services for addressing suicidality in adolescents seem to be those that affect multiple contexts, including family and home, and that recognize the developmental complexities of adolescence (Daniel and Goldston, 2009).
Mojtabai et al. (2016) examined the 12-month prevalence of major depressive episodes in a sample of adolescents (ages 12 to 17) and young adults (ages 18 to 25) and found a significant increase in these episodes between 2005 and 2014. During the period observed, depressive episodes rose in prevalence from 8.7 to 11.3 percent in adolescents and from 8.8 to 9.6 percent in young adults, which remained significant even after adjusting for substance use disorder and sociodemographic factors. Depression in adolescents is linked to systemic disorders such as diabetes, and it may be increasing in adolescents, especially among females.10
Wide disparities by gender and race and ethnicity are evident in the onset and incidence of depression as well. Breslau and colleagues (2017) found sex differences in both onset and incidence of depression in adolescents. Diagnostic differences have also been observed, with non-Latinx White adolescents more than two times as likely to report a prior diagnosis of depression compared to Latinx adolescents (Thomas et al., 2011).
9 Internalizing-externalizing is a broad classification of behaviors and disorders among children and youth. Externalizing behaviors and disorders are mainly characterized by actions in the external world, such as acting out, antisocial behavior, and aggression. Processes within the self, such as depression, anxiety, and somatization, characterize internalizing behaviors and disorders.
10 Depression has been linked to early-life adversity, which increases both metabolic dysregulation and a treatment-resistant type of depression. Early-life adversities contribute disproportionately to many health problems, both physical and mental.
A recent study found that adolescents who demonstrated stronger activation in the ventral striatum when making socially positive decisions for their families showed declines in depressive symptoms over time. This suggests that neural sensitivity to eudaimonic rewards—rewards that are intrinsically meaningful and provide a sense of social connection and belonging—predicts changes in depressive symptoms over time. For adolescents, therefore, “the striatal response to eudaimonic rewards may represent a motivational orientation toward engaging in inherently meaningful activities that may increase feelings of value, meaningfulness, and intrinsic reward” (Telzer et al., 2014, p. 6603). If this is the case, this striatal response provides additional psychological and social resources, leading to better well-being over time (Telzer et al., 2014).
Recent research also suggests that as peer relationships gain importance during adolescence, the experience of peer rejection (either firsthand or witnessed among one’s social group) can have long-term consequences for development (Masten et al., 2013; Nishina et al., 2005; Prinstein and Aikins, 2004; Prinstein et al., 2005; Rigby, 2003). Youth facing higher levels of social risk may be especially sensitive to social information. This in turn means they are more likely to experience greater distress and difficulty regulating their emotions in response to negative social stimuli. It has been hypothesized that, as these vulnerable youth enter into a developmental period characterized by growing neural plasticity and more frequent exposure to social stressors, peer victimization and the fear of being negatively evaluated contribute to a type of long-term neural development that underlies emotion processing and regulation in social contexts. Alterations in the development of neural function, such as blunted functioning of the DLPFC11 area, may lead to increased vulnerability to or worsening of depressive symptoms among adolescent youth (Lee et al., 2018). These findings suggest that improving DLPFC function in social contexts may be a valuable neural target for prevention efforts or interventions geared toward breaking the cycle of social difficulties and depressive symptoms in adolescents. According to Lee and colleagues (2018), interventions that use emotion-regulation strategies and repeated practice and training may improve emotion regulation by engaging greater recruitment of the DLPFC. Such interventions hold the potential to alter developmental trajectories toward depression among adolescents with social risk.
According to the National Comorbidity Survey of Adolescents in 2002–2004, 31.9 percent of adolescents met the criteria for an anxiety disorder
11 The dorsolateral prefrontal cortex (DLPFC) is an area in the prefrontal cortex of the brain.
in the United States (Merikangas et al., 2010). The most frequent disorders among adolescents are separation anxiety disorder and specific and social phobias (Beesdo et al., 2009). Females were more likely than males to report an anxiety disorder. Non-Latinx Black adolescents have higher rates of anxiety disorders compared to their non-Latinx White counterparts. Additionally, the prevalence rates of anxiety disorders were higher for adolescents from households with divorced or separated parents, indicating a possible association between family composition and anxiety (Beesdo et al., 2009).
Studies have examined the neurobiological and genetic underpinnings of anxiety (Hettema et al., 2001; Norrholm and Ressler, 2014). Beyond genetic influences, other studies reveal the role that parenting and parental anxiety diagnosis may have on the onset of adolescent anxiety (Beesdo et al., 2009; Eley et al., 2015; Kendler et al., 2000; Lieb et al., 2000). A meta-analysis conducted by Siegel and Dickstein (2012) indicated that children and adolescents who have a parent diagnosed with anxiety are more likely to display symptoms of anxiety themselves. Kendler et al. (2000) found that high levels of coldness and authoritarianism in parents were modestly associated with a higher risk for nearly all anxiety disorders, thereby suggesting that parenting style might also influence the onset of anxiety disorders (Beesdo et al., 2009). However, they also found that the impact of parent protectiveness was variable, given that some anxiety disorders, such as generalized anxiety disorder, panic disorder, and phobia, were significantly associated with protectiveness, whereas other disorders, such as bulimia, substance use disorder, and alcohol dependence, were not (Beesdo et al., 2009).
As reviewed in Chapter 2, adolescence is a key developmental period of significant brain maturation and changes in neuroendocrine function (Ojeda and Terasawa, 2002). These characteristics likely contribute to enhanced neural susceptibility to the negative consequences of anxiety and stress (Eiland and Romeo, 2013), particularly because the limbic and cortical regions of the brain that continue to develop during adolescence are some of the most stress reactive areas (McEwen, 2005; Eiland and Romeo, 2013). As described above, the heightened focus on social acceptance in adolescence can promote a corresponding fear of rejection, which may contribute to social anxiety and depression (Klapwijk et al., 2013; Nelson et al., 2014; Pfeifer et al., 2013). Research suggests that social anxiety and maladaptive social responding in adolescence is linked to dysfunction of the striatum, involved in behavior and learning related to rewards (O’Doherty, 2004; Yin et al., 2009), and its connections to the medial prefrontal cortex, which updates predictions based on outcomes (Britton et al., 2013; Fitzgerald et al., 2011; Haber et al., 2006; Jarcho et al., 2015; O’Doherty, 2004; Roy et al., 2013).
A number of treatment and intervention approaches show promise for reducing anxiety and stress among adolescents. A meta-analysis examining anxiety prevention programs for adolescents concluded that universal anxiety programs, in comparison to those targeting other mental health disorders, are particularly effective. The effect size of universal anxiety prevention programs was 0.17, whereas the effect sizes for universal depression, eating disorder, and substance use prevention disorders were 0.12, 0.08, and 0.5, respectively (Fisak et al., 2011). Expanding the breadth and accessibility of anxiety prevention resources is essential since there is growing concern that many cases of anxiety are undiagnosed among adolescents (Siegel and Dickstein, 2012).
Anxiety may present itself differently during adolescence than at other time periods. Garland (2001) found that for some adolescents, physical symptoms of anxiety, such as stomach or headaches, may go unrecognized. Compounded with hormonal changes during this time, symptoms may also manifest as behavioral defiance instead of the more typical cognitive symptoms, such as worrying (Frick et al., 1999). Beesdo and colleagues (2009) call for the integration of a developmental perspective into the next revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) to consider the differences in age of onset, symptomology, and outcome to further understand how anxiety disorders manifest in childhood and adolescence. Recognizing the nuances of anxiety disorders in adolescence is critical both to better address the needs of those already diagnosed and to reduce prevalence in the future.
Substance Use Disorder and Addiction
Substance use disorder is characterized in the DSM-5 as a problematic pattern in the use of an intoxicating substance that results in significant impairment or distress (National Institute on Drug Abuse, 2018). In its most severe form, substance use disorder can be classified as addiction, which is a chronic disorder marked by compulsive behavior, continued substance use despite negative consequences, and long-lasting neurological changes (National Institute of Drug Abuse, 2018). Because the prefrontal cortex continues to mature through the adolescent period and into adulthood, its sensitivity to early-life adversity is a factor in impairing self-regulation and increasing the likelihood of addictive behavior (see Chapter 2).
Data from the CDC’s 2017 Youth Risk Behavior Survey indicate that 15.5 percent of middle and high school students surveyed have tried alcohol before age 13 (Centers for Disease Control and Prevention, 2018b). The survey also found that 19.8 percent of all surveyed adolescents used marijuana at least once during the same time frame (Centers for Disease Control and Prevention, 2018b, 2018c). However, trend data obtained from the
same survey suggest that student use of marijuana and alcohol use has declined since 2009, when the corresponding rates for alcohol and marijuana use within 30 days of the survey were 41.1 percent and 20.8 percent, respectively (Centers for Disease Control and Prevention, 2018b, 2018c).
While youth cigarette use has continuously declined since 2000, e-cigarette use has been rising dramatically. Among high school students e-cigarette use increased from 11.7 percent in 2017 to 20.8 percent in 2018, and among middle schoolers over the same brief period from 3.3 percent to 4.9 percent. Current use of any tobacco product for both high school and middle school students has also increased since 2015 (Food and Drug Administration, 2018). Although survey data suggest that youth are less likely to use opioids than alcohol or marijuana, recent findings from the National Survey on Drug Use and Health suggest that adolescents under the age of 26 may be more likely to use heroin and pain relievers than adults (National Institute on Drug Abuse, 2018). Overall, between 1999 and 2007, the death rate due to drug overdose among adolescents ages 15 to 19 more than doubled, rising from 1.6 per 100,000 deaths to 4.2 per 100,000. It then declined by 26 percent from 2007 to 2014 (dropping to 3.1), and then subsequently increased in 2015 (3.7). Death rates for drug overdoses among those ages 15 to 19 in 2015 were highest for opioids, specifically heroin (Curtin et al., 2017).
The environment can have a strong relation with substance misuse. For example, in the case of opioid misuse, Ford et al. (2017) found that neighborhood social disorganization (e.g., levels of crime, disinvestment, and population turnover) and social capital (the degree to which members of a community are engaged in communal life) were significantly related to opioid misuse in adolescents. Compared to adolescents living in urban areas, adolescents living in suburban and rural areas were more likely to report misuse of prescription opioids (Ford and Wright, 2017).
The relationship of youth to the health care system also appears crucial. Ensuring confidentiality has been found to be central to facilitating honest disclosure from adolescents about all sensitive subjects, including substance use and need for treatment (see the following section, “Confidentiality and Parental Consent Requirements”). In addition, health care providers may not be equipped to address substance use among adolescents. Wilson and colleagues (2018) found that pediatric physicians were not reaching adolescents using opioids. Of the pediatric residents whom completed the survey, 82 percent reported that they provided care to patients who misused opioids and another 82 percent reported caring for patients who they assessed as at risk for opioid overdose but only 42 percent had ever counseled patients on ways to prevent overdose and only 10 percent had ever prescribed the opioid reversal drug naloxone to eligible patients (Wilson et al., 2018).
An important aspect of substance use in adolescence is comorbidity with other mental health conditions such as anxiety and depression (Deas and Brown, 2006; Insel, 2014). The co-occurrence of marijuana use and anxiety is one such example, as individuals with marijuana use disorder are more than five times more likely than other people to also suffer from an anxiety disorder (Stinson et al., 2006). Marijuana is the most common illicit drug used by adolescents in the United States (Johnson et al., 2014), and many adolescents report using it to reduce anxiety (Patrick et al., 2011). Research indicates that the effects of marijuana use on brain structure and function can further contribute to issues with emotional processing, memory, and attention (Mashhoon et al., 2015; Mechoulam et al., 2007; Quickfall and Crockford, 2006; Cancilliere et al., 2018).
Body Dissatisfaction and Eating Disorders
For youth, body image is related to identity development and mental health, as well as family, peer, and romantic relationships. When youth are dissatisfied with their physical appearance, it can hamper their ability to complete the physical and socio-emotional tasks of development, as well as damage their physical and mental health.
Body dissatisfaction is common among U.S. adolescents (Neumark-Sztainer et al., 2002), seems to increase with age (Calzo et al., 2012), and can remain with adolescents into adulthood (Neumark-Sztainer et al., 2006). As discussed in Chapter 2, adolescence is a time of greater sensitivity to peer influence, social acceptance and rejection, and social stimuli. These changes seem to be due to greater activity in the brain regions that make up the “social brain”—regions that regulate our reactions to other people (Steinberg, 2014). These changes are an important part of adolescents’ socio-emotional and cognitive development, but when coupled with a greater tendency toward social comparison, body changes, and stronger pressure to conform to gender roles, they may exacerbate body dissatisfaction in some adolescents (Markey, 2010; Steinberg, 2014).
Adolescents with overweight or obesity may be particularly vulnerable to body dissatisfaction because of weight stigma (the societal devaluation of people with overweight or obesity), which is widespread in the United States (Andreyeva et al., 2008; Pont et al., 2017). Weight-based harassment, including teasing, bullying, and victimization, is widespread among school-age adolescents, especially for girls (Bucchianeri et al., 2013; Puhl et al., 2011; Pont et al., 2017). However, body dissatisfaction is not limited to adolescents with overweight: adolescent boys with underweight also report high levels of body dissatisfaction (Calzo et al., 2012). Experiencing weight-based victimization at the hands of peers increases adolescents’ risk of low self-esteem and poor body image, two aspects of self-concept (Pont
et al., 2017; Calzo et al., 2012; Davison and Birch, 2002). In addition, weight-based bullying and teasing increases the risk of adverse mental and physical health outcomes, such as depression, anxiety, suicidality, self-harm behaviors, substance use, and disordered eating behaviors (Pont et al., 2017; Calzo et al., 2012; Neumark-Sztainer et al., 2002).
Eating disorders (anorexia nervosa, bulimia nervosa, subthreshold anorexia nervosa, subthreshold bulimia nervosa, and subthreshold binge eating disorder12), which are often associated with body dissatisfaction, affect adolescents of all genders, races, ages, and weight statuses. Estimates of the national prevalence of eating disorders among adolescents ages 13 to 18 range from 0.3 percent for anorexia nervosa to 2.5 percent for subthreshold binge eating disorder (Swanson et al., 2011). Swanson and colleagues (2011) found that among these five eating disorders, the median age of onset ranged from 12.3 to 12.6 years. Bulimia nervosa, binge eating disorder, and subthreshold anorexia nervosa were significantly more prevalent among girls than boys, though no significant differences emerged by gender for anorexia nervosa and subthreshold binge eating disorder. Latinx and non-Latinx Black youth had higher rates of all four eating disorders that were assessed, although the difference was only significant for bulimia nervosa and subthreshold binge eating disorder (Swanson et al., 2011); and sexual minority youth report higher rates of eating disorder symptoms (Austin et al., 2013) and disordered eating behaviors (Watson et al., 2017, Matthews-Ewald et al., 2014).
Adolescent eating disorders are often accompanied by other psychiatric disorders (Lock, 2015), with most adolescents with an eating disorder also meeting criteria for at least one other psychiatric disorder (Swanson et al., 2011). Adolescents with eating disorders are also more likely than other adolescents to have higher levels of suicide ideation (Swanson et al., 2011), and suicide accounts for about half of deaths from anorexia nervosa (Birmingham et al., 2005).
Although eating disorders are often thought to mostly affect girls and women, boys and men are also at risk (Allen et al., 2013; Mitchison et al., 2014; Limbers et al., 2018), and the prevalence of eating disorders among boys and men has increased (Campbell and Peebles, 2015; Lavendar et al., 2017). Disordered eating behaviors among adolescent males are of particu-
12 Subthreshold eating disorders were those that did not meet the diagnostic criteria for anorexia nervosa (as defined by the DSM-IV), or binge eating disorder (as defined by the DSM-5). Subthreshold bulimia nervosa was not assessed. The definition of subthreshold anorexia nervosa included (1) lowest body weight less than 90 percent of the adolescent’s ideal body weight; (2) intense fear of weight gain at the time of the lowest weight; and (3) no history of another threshold-level eating disorder. The definition of subthreshold bulimia eating disorder included (1) binge eating at least twice a week for several months; (2) perceived loss of control; and (3) no history of another threshold-level eating disorder or subthreshold anorexia nervosa.
lar public health concern because males experiencing them are less likely to seek and receive treatment for eating disorders due to greater shame and stigma (Lavendar et al., 2017; Limbers et al., 2018).
The precise etiology of eating disorders is unknown, but recent studies suggest that to some degree eating disorders are heritable (Bulick et al., 2019). Brain imaging studies have been used to examine potential neurobiological pathways that may contribute to the onset of anorexia, with mixed results (Kaye et al., 2013).
Behavioral Health Care Services
Despite a documented need for behavioral health care services, adolescents and young adults remain an underserved population. Data from the Medical Expenditure Panel Surveys show significant increases in the use of any outpatient mental health service among adolescents ages 12 to 17, from 9.0 percent in 1996–1998, to 11.5 percent in 2003–2005, to 14.0 percent in 2010–2012 (Olfson et al., 2015). Still, many adolescents and young adults underuse behavioral health services, despite documented need (e.g., Han et al., 2015; Hunt et al., 2015; Mojtabai et al., 2016). Only one-third of adolescents with any mental disorder report receiving treatment (Merikangas et al., 2011).13 In a survey of 51 adolescents diagnosed with depression, the emotional toll of seeking treatment and the inability to access treatment (i.e., distance from home and longer referral delays than help-seeking delays) were the two most frequently reported barriers to access (Boyd et al., 2018; MacDonald et al., 2018). Some adolescents also expressed their desire to have greater access to behavioral health services, such as more frequent interaction with their providers or a longer duration of treatment (Boyd et al., 2018).
Additionally, the unique patterns and needs demonstrated by adolescents and young adults in their use of behavioral health services may contribute to the services’ underutilization. For example, because youth in these age ranges tend to greatly value social relationships, concerns about negative social repercussions for seeking help can be a significant barrier to seeking treatment (Scott and Davis, 2006; Spence et al., 2016). Moreover, adolescents and young adults have specific provider preferences that may prevent them from obtaining appropriate outpatient care. Youth from minority racial/ethnic backgrounds have expressed concerns about receiving culturally and linguistically appropriate care from largely White providers (Lee et al., 2009). (See Box 7-3 for a discussion of “Disparities in Behavioral Health Care.”) Young adults have reported that mental health providers from older generations do not adequately understand their expe-
Given their unique social, behavioral, and neurobiological characteristics, adolescents are susceptible to mental and behavioral health disorders and in need of tailored treatment approaches. In the absence of age-specific services, many adolescents and young adults rely on emergency departments, crisis services, school services, and inpatient substance use treatment facilities to obtain mental health care (e.g., Jin et al., 2003; Lin et al., 2012). Youth themselves have reported their desire for more access to behavioral health services in schools, as illustrated by Box 7-4. In addition, there is concern that the transition from childhood to adult behavioral health services for adolescents can disrupt the continuum of care, resulting in poor behavioral health outcomes (Macdonald et al., 2018).
For many adolescents, primary care physicians are the first contact for those seeking help, so it is important that these physicians be equipped to recognize the symptoms of behavioral health issues to refer patients to specialized resources (Macdonald et al., 2018). In specialized care settings, treatment strategies that are tailored for adolescents can be used. For example, for adolescents with substance use disorders, some of the leading behavioral health interventions are cognitive behavioral therapy, medication, and recovery support services. High efficacy has been noted for psychosocial services that combine individual behavioral approaches with community-based or family interventions (Chadi et al., 2018). As adolescents transition from pediatric to adult health care, health care systems can support their mental and behavioral health by smoothing the transition of services.
As described above, confidential care is a core principle of adolescent-friendly health services. As adolescents develop, their capacity for autonomous decision-making and abstract thinking grows (Patton et al., 2016; see also Chapter 2). Providers can enable this growth by facilitating adolescents’ meaningful participation in their own health care decisions, in a confidential setting, as appropriate. Likewise, counseling on sensitive issues is particularly important for adolescent health care, as adolescence is a time when risky behaviors, mental disorders, and sexual behaviors emerge. Adolescents ages 15 to 17 express the most concerns about confidentiality, but those ages 18 to 25 also have concerns, particularly since many of these young adults remain on their parents’ health insurance plans (Sedlander et al., 2015). Ensuring confidentiality and protecting patients’ privacy are essential to screening for these sensitive issues. Adolescents who were counseled on confidentiality and spent time alone with their providers are more likely to discuss sensitive topics with their providers (Grilo
et al., 2019), increasing their likelihood of receiving appropriate services. Furthermore, a secondary analysis of adolescent primary care patients ages 12 to 17 revealed that disclosure of rates of substance use and substance use problems was three to four times higher when reported in anonymous interviews as compared to the rates disclosed in routine clinical screening
(Gryczynski et al., 2019). However, studies have found that providers discuss confidentiality with their adolescent patients in only 31 to 55 percent of routine visits (Lau et al., 2013; Grilo et al., 2019), and that barely a third of all adolescents with a wellness visit in the prior year spent any time alone with a clinician (Alexander et al., 2014; Irwin et al., 2009). Assur-
ing confidentiality in health care settings is key, as many adolescents fail to seek the services they need or discuss sensitive issues because they fear their confidential information will become known, especially to a parent (Ford et al., 1997; Carlisle et al., 2006; Lehrer et al., 2007; Sedlander et al., 2015; Copen et al., 2016).
Despite its importance in adolescent health care, confidential care is not guaranteed for youth (Tylee et al., 2007). While adolescent health experts and youth-serving organizations have endorsed and supported the need
for confidential care for youth, access to confidential care varies greatly by state and by medical condition (English et al., 2010; Society for Adolescent Health and Medicine and American Academy of Pediatrics, 2016). For example, all states currently allow minors to consent for STI diagnosis and treatment, although some states have age restrictions (with minimum ages ranging from 12 to 16), and others allow physicians to inform parents (Guttmacher Institute, 2019a). Mental health and contraceptive care are other sensitive services where policies vary depending on age or living situations (i.e., married, emancipated, or living apart from parents) (English et al., 2010; Guttmacher Institute, 2019b).
Even when a state allows minors to consent to services without parental consent, confidentiality is not necessarily guaranteed. For instance, an adolescent covered by her parent’s health insurance can have a confidential visit with a health care provider, and later have this confidentiality breached when a bill, known as an explanation of benefits, is sent to their parents detailing the charges for the confidential services. Some jurisdictions, such as Erie County, New York, and Massachusetts, require that sensitive services such as contraceptive and STI care be suppressed from the explanation of benefits (Tebb et al., 2014). Others do not require that an explanation of benefits be sent when there is no balance due (the states of New York, Massachusetts, and Wisconsin) (Tebb et al., 2014).
Health care providers themselves can also be barriers to confidential services, because practices and policies regarding confidentiality and youths’ rights are not well known or used by all health care providers and institutions. Parents are not always asked to leave during health care visits (McKee et al., 2011), and youth often report that their providers do not inform them about confidentiality policies (Gleeson et al., 2002). Many youth do not know what type of care is confidential and what will be shared with others, resulting in mistrust and poor communication (Gleeson et al., 2002). In addition, providers do not always ask about sensitive subjects. For example, a survey of school-based health center directors and clinicians in New York state who work with middle and high school students revealed that one of the most common perceived barriers to discussing substance use with students was their belief that students would not be truthful about their substance use (Harris et al., 2016).
While there is a tension between parental interests in shaping the development of their children and the society’s interest in ensuring the reduction of risks, health care providers can play a key role in helping parents and youth navigate these issues and in ensuring that the rights of adolescent clients are protected (Fox et al., 2010b; Ringheim, 2007). Of course, adolescents at different stages of development have different needs, and health care settings will need to assess and adapt their procedures to ensure that age-appropriate care is offered.
At the core of an adolescent-friendly health system is the health care workforce, which delivers services and interacts directly with young people. As noted in Chapter 2, adolescence is a critical developmental period in which many important physical, neurobiological, and socio-behavioral changes occur, in which young people experiment with new behaviors and activities, and for some, when mental disorders begin (see preceding section, “Behavioral Health Care”). It is also a time in which lifelong health behaviors are often established, laying the foundation for future health and well-being or setting the adolescent on an unhealthy course (Patton et al., 2016). As such, adolescents need health care providers who understand the unique needs of their development. Providers caring for adolescents need the knowledge and training to discuss sensitive health topics in a respectful and effective manner, protect adolescents’ rights and privacy, and prepare young people to be independent consumers of health care.
Adolescents receive care from a variety of providers, including pediatricians, internists, family medicine physicians, advance practice nurses, physician assistants, and obstetricians/gynecologists, depending on their gender, age, and health care needs. Among these providers, the level of comfort in providing adolescent health care services may vary. According to surveys of pediatric residents and residency directors, most pediatric training programs do not adequately cover sensitive adolescent health topics, such as mental and behavioral health, interpersonal violence, reproductive health, chronic illness, and community adolescent health (Davis et al., 2018; Fox et al., 2010a; Kershnar et al., 2009). This lack of training among pediatricians is particularly noticeable around sexual and reproductive health care services. Surveys of pediatric and family medicine residents have found that these residents have significantly less training and comfort in providing sexual and reproductive health services, such as conducting pelvic exams, prescribing contraception, and counseling about pregnancy termination, than their peers in obstetrics-gynecology (Davis et al., 2018; Kershnar et al., 2009). Providers may also be unprepared or uncomfortable navigating their state’s minor consent laws (see the above section, “Confidentiality and Parental Consent Requirements,” for a more detailed discussion) (Santa Maria et al. 2017; Fox et al., 2010a). Given that adolescents may withhold information or even delay or forego care if they fear that their confidentiality will be violated, this is particularly concerning, especially for sexual-minority teens, who face elevated sexual health risks and who underutilize routine reproductive health care (Charlton et al., 2011; see also “Confidentiality and Parental Consent Requirements,” above).
Furthermore, young people frequently report that their health providers fail to ask about sensitive issues, including sex and sexuality, substance
use and other risky behaviors, as well as abuse and violence and other trauma exposure, all of which are often at the core of adolescents’ and young adults’ experiences and concerns (Klein and Wilson, 2002; Schoen et al., 1997).14 (Box 7-5 discusses the need for health care providers serving adolescents to be trained in and understand trauma.) Klein and Wilson (2002), analyzing data from a nationally representative sample of 6,278 adolescents, reported that while 71 percent reported at least one of eight potential health risks, 63 percent had not spoken to their doctor about any of these risks. They further reported that the highest-risk adolescents had the lowest rates of being asked about risky health behaviors. In addition, Alexander and colleagues (2014), in an observational study of 253 adolescents and 49 physicians in 11 clinics in North Carolina, reported that while 65 percent of the visits had some conversations about sexuality, the average time spent talking about sexuality was only 36 seconds.
Adolescents understand their need for providers to engage in unrestricted, honest conversations about their health (Daley et al., 2017), but providers frequently fail to have these essential conversations. Adolescents report that health care providers do not spend enough time to get to know them, and that they focus on their problems rather than on their strengths (Fox et al., 2010b). Unfortunately, most health services providers may be ill-informed about the concerns that young people have when seeking care: young people report that they are infrequently asked to give any feedback regarding the health services they receive (Fox et al., 2013).
Outside of clinical settings, innovative methods for delivering health services to adolescents have emerged over the past several decades. These programs seek to meet adolescents where they are, delivering services in other locations to remove barriers in access to care. One such nonclinical setting is schools. Because school-age adolescents spend much of their day at school during the academic year, schools have often been utilized as a
14 Providers report that a major obstacle to asking about abuse is the concern that inquiry will lead to reactions and consequences for patients that the health care provider may not be equipped to handle (Leder et al., 1999). Physicians’ failure to inquire is also, in part, due to the lack of commonly accepted measures (i.e., screening instruments) (Savell, 2005) and lack of strategies for incorporating the use of measures into their practice (i.e., how to practically implement screening measures) (Weinreb et al., 2007). DiLillo and colleagues (2006), for example, have pointed out that health care providers lack an understanding as to what mode of administering abuse screens (e.g., paper-and-pencil questionnaire, computer-assisted survey, or face-to-face structured interview) is most effective, decreases levels of discomfort, and increases willingness to disclose.
setting for health interventions. This includes expansion of school-based health services, in which school psychologists, social workers, and other allied health professionals are involved in primary prevention activities, as well as screening and treatment at the school or after-school site, if services are available. However, policy makers and health systems must ensure that measures to increase screening of behavioral health problems among adolescents are accompanied by knowledge of places to refer for treatment, a warm handoff to treatment providers, and, most importantly, adequate resources for treatment.
School-Based Care Delivery
School-based health centers (SBHCs) can be an effective way of reaching adolescents and providing them with preventive, reproductive, and mental health care (Allison et al., 2007; Juszczak et al., 2003; School Based Health Alliance, 2014). These services address many of the shortfalls and limitations of the school-nurse model (Gustafson, 2005), and there is evidence that access to SBHCs increase the use of primary care, reduce the use of emergency rooms, reduce hospitalizations, and expand access to and quality of care for underserved adolescents, even those without insurance, compared to traditional outpatient clinics (Soleimanpour et al., 2010). School-based health centers are also popular among adolescents, who report feeling greater comfort in using them as compared to primary care settings (Mason-Jones et al., 2012). As of 2014, there were 2,315 SBHCs that served students and communities in 49 of 50 states and the District of Columbia, serving more than 2 million students each year. More than one-half of SBHCs were located in urban areas. Furthermore, the students served were disproportionately low-income students and students of color who were uninsured or underinsured and had limited access to other sources of health care (School-Based Health Alliance, 2014).
While SBHCs play an important role for underserved adolescents and can greatly increase access for underinsured and uninsured teens and other who find care hard to find, including teens living in rural areas (Mason-Jones et al., 2012), there has been little high-quality research evaluating these health centers and their impact (Soleimanpour et al., 2010). Constraints on most SBHCs—especially regarding sexual and reproductive health care and access to contraception and HIV testing—greatly limit their ability to provide teens with the most needed services. Moreover, only a small proportion of schools throughout the country have SBHCs, and many schools do not have the resources to replicate this model.
While it may not be feasible for all schools to contain an SBHC, offering health services to adolescents in the school setting is critical to meeting young people where they are. For example, one in three adolescents who do receive treatment for mental illness do so in a school setting (Merikangas et al., 2011), and the presence and magnitude of mental health services available in schools can significantly impact suicide risk and substance abuse in adolescents (Paschall and Bersamin, 2018). Adolescents with mild to moderate mental and behavioral disorders are more likely to use school mental health services in schools that provide early identification resources (Green et al., 2013). Students at schools with mental health services had significantly lower likelihoods of suicide ideation, suicide attempts, and cigarette smoking compared to students at other public schools (Paschall and Bersamin, 2018).
These findings support the necessity to expand school-based health services through SBHCs, which provide integrated medical, sexual, and reproductive and mental health services, or through additional mental health services on site or through linkages to mental health services in communities. Integrating health services into the schools setting, whether through increased behavioral health options or SBHCs, can increase access to care through viable, youth-friendly services. However, for adolescents who do not attend school, other mechanisms for service delivery are required.
An emerging setting through which to reach adolescents is digital. Digital delivery of health services, commonly referred to as “eHealth,” has increased in recent years and may be a particularly important method for delivering services to adolescents, given their propensity for using digital and social media. These vehicles can play a constructive role in improving adolescent access to health care and making the health-seeking experience easier (Divecha et al., 2012; Guse et al., 2012), although their use among adolescents is still relatively new (Shaw et al., 2015). Currently use of digital media has largely focused on the use of social media for health education and is limited by the need for more rigorous methodological studies and by a lack of information on how adolescents use social media (Shaw et al., 2015).
Some qualitative studies, in which adolescents and parents were asked their views about the use of digital technology in health care, also suggest that digital and social media can be used to make communication with adolescents easier—and to help in their communications with their parents—perhaps resulting in improved preventive care (Coker et al., 2010; Shakibnia et al., 2018). Lin and Zhu (2012) have suggested that health care providers can take advantage of adolescents’ frequent social media engagement to follow patients between office visits and to increase compliance with health recommendations made during visits, such as increased exercise and healthy diet choices, with the motivation of online peer support and social gaming. Wong and colleagues (2014) suggest that social media and Web-based strategies can be used to improve adolescent engagement in care, especially for those who might be harder to reach. They recommend increased and early collaboration with adolescents and young adults to include their perspectives along with those of health experts when developing content; with technology experts to develop applications; and with research teams to measure effectiveness with data collection tools built into social media platforms.
In response to adolescents’ reliance on technology, recent behavioral health interventions have sought to engage adolescents through the internet
and smartphones. In general, these freestanding behavioral health internet interventions to address depressive disorders have been found by some studies to show modest effectiveness, but they have shown much greater effectiveness when combined with simple face-to-face interventions in the primary care setting, such as brief advice or interviews with the physician.
For example, Van Voorhees and colleagues (2009) examined the feasibility and efficacy of a low-cost and accessible behavioral health intervention in the primary care setting to engage primary care physicians with their adolescent patients who exhibited depressive symptoms. After dividing the patients into two treatment groups—a “BA” group given brief advice recommendations (of 1 to 3 minutes) and an “MI” group given collaborative motivational interviews (of 10 to 15 minutes)—and combining that intervention with an Internet-based resiliency intervention, both the BA and the MI groups exhibited significant declines in depressive disorder symptoms at 6 weeks after baseline and again after 12 weeks (Van Voorhees et al., 2009). The results also suggested significant increase in adherence to the internet intervention. Other freestanding behavioral health internet intervention trials resulted in 30 to 50 percent adherence, whereas in the MI group and BA group, respectively, they reported 91 percent and 78 percent adherence (Christensen et al., 2002; Santor et al., 2007; Van Voorhees et al., 2009). These findings indicate the promise of combining primary care physicians’ involvement with internet interventions to maximize adherence and decrease depressive symptomology among adolescents.
Similarly, Kennard and colleagues (2018) tested a behavioral health intervention that complemented in-person suicide prevention programming with a smartphone application designed to assist adolescents recently discharged from the hospital due to suicidal behavior. The As Safe As Possible (ASAP) intervention is a 3-hour program focused on emotional regulation and safety planning and is administered to the adolescents in their inpatient unit. It promotes the utilization of a smartphone app, which sends daily text messages to rate levels of emotional distress and provides helpful resources. Although the researchers had a small sample size and their results did not produce any significant clinical effects, the rate of suicide attempts among participants in the ASAP intervention who were also undergoing usual treatment (inpatient contact with unit therapist) was one-half the rate among patients using usual treatment alone. Accordingly, interventions that emphasize the integration of technology with face-to-face behavioral health services, such as ASAP, merit further study.
Although more research and development is still needed, digital media strategies can assist in reaching adolescents—perhaps assist providers in being more comfortable, too. They can supplement in-person behavioral health interventions, providing adolescents with health education that is reliable and accurate, helping them find and access services, preparing them
for their health care visits, and eliciting their much-needed feedback on the experience of care.
A systemic approach to prioritizing the health and well-being of adolescents is needed on a national level, including clear goals and priorities established to help mobilize both the public and private sectors to improve adolescent health. Simultaneously, society needs to recognize its ambivalence about adolescents (discussed at greater length in Chapter 1) and the roles government can play in their lives. The committee’s vision for an adolescent-friendly health system is presented in Box 7-1, and its recommendations to incorporate neurobiological and socio-behavioral research into the development of more effective health policy, programs, and practices aimed at improving the health and well-being of adolescents are presented in Box 7-6. Taken together, these recommendations constitute a blueprint for achieving a developmentally appropriate health system to better meet the needs of today’s youth.
The committee also recognizes the need to build a cross-system, national prevention policy that focuses on adolescents. Many of the funding efforts to date have treated the health problems of adolescents in a fragmented manner, with limited recognition of their interwoven causes and effects. For example, previous efforts have focused mainly on providing information and education, sometimes resulting in adolescents receiving fragmented and disconnected messages from different stakeholders in their lives. Few previous efforts have addressed income distribution and access to resources, poor educational experiences, and limited job and other life opportunities—which affect health status during adolescence as well as impacting adult health, with consequences for the health system and the delivery of health services.
Risk prevention models need to consider the social determinants of adolescent behavior, and prevention efforts must acknowledge that risk taking is an inherent and normative aspect of adolescent development (Ostaszewski, 2015). Unfortunately, traditional health education generally fails to account for these environmental factors, and thus addresses only a small part of what influences adolescent risk taking. For example, prolonged exposure to neighborhood poverty greatly increases the risk for teenage pregnancy (Wodtke, 2013), perhaps due to lack of economic or job training opportunities and viable alternatives to early childbearing, but few sexual and reproductive health education interventions address these factors (Brindis and Moore, 2014).
RECOMMENDATION 7-1: Strengthen financing of health care services for adolescents, including insurance coverage for uninsured or underinsured populations.
The importance of health insurance coverage has been well documented, and strengthening health insurance coverage for adolescents is a cornerstone for advancing adolescent health. Adolescents need comprehensive, continuous health insurance coverage, regardless of their parents’ health coverage. Federal, state, and local agencies, in partnership with philanthropic foundations and the private sector, should assure adequate financial support for comprehensive, high-quality, culturally informed, and integrated physical and behavioral health services for adolescents.
Medicaid is a key lever for increasing health insurance coverage and health care access among the nation’s youth, providing health insurance
coverage for 35 million children and youth ages 18 and under and for 8.5 million young people ages 19 to 26 (Kaiser Family Foundation, 2019). The following recommended adjustments within Medicaid would increase access for adolescents:
- Expand Medicaid within the states that have not yet done so.
- Increase Medicaid reimbursement rates for pediatric health services to be on par with those for Medicare.15
15 Nationwide, primary care services provided under Medicaid are reimbursed at significantly lower rates than those provided under Medicare. When Medicaid reimbursement rates were temporarily increased to be on par with Medicare, participation among office-based primary care pediatricians increased (Tang et al., 2018).
- Allow for equitable reimbursement for comprehensive health services, including psychosocial, behavioral health, dental, optical, and nutrition services.
- Eliminate the 5-year eligibility restriction on the use of Medicaid for documented immigrant adolescents, opening up health insurance access to adolescents from immigrant families.16
While they are important, categorical funding streams such as Medicaid, with their own unique eligibility requirements, have sometimes stifled the development of multidimensional interventions. To finance the provision of comprehensive, adolescent-friendly health services, federal and state policy makers should adapt eligibility requirements to allow a blending of existing funding mechanisms across sectors at the local level. Blended funding mechanisms, such as those that combine educational and health collaborative efforts, help maximize existing funding, and develop additional, sustainable funding to meet funding gaps, such as for school-based mental health support (Brindis and Sanghvi, 1997), have been adopted by several states, localities, and organizations (Trust for America’s Health, 2018). By decategorizing siloed but overlapping government-funded programs, communities can maximize the provision of interrelated services to respond to adolescents’ health needs. In addition to this blending and braiding of services, collaborative efforts are needed to help maximize existing funding, and additional, sustainable, and integrated funding needs to be developed to meet major gaps in the field of adolescent health.
RECOMMENDATION 7-2: Improve access to comprehensive, integrated, coordinated health services for adolescents.
Adolescents have distinct health care needs that span the health care system. To provide youth with the supports they need for healthy development, the health care system should provide comprehensive, integrated, and coordinated health services for all adolescents. If full integration is not possible, then authentic collaboration is recommended. State and federal agencies, health systems, and health care providers should collaborate to provide integrated care for adolescents, linking physical and mental health providers as well as other vital support services to the health sector. For
16 Lack of insurance coverage limits access to care for undocumented adolescents and even for U.S.-born children of undocumented immigrant parents (DeCamp and Bundy, 2012; Ku and Matani, 2001), and legally documented immigrants must live in the United States for 5 years before they are entitled to apply for Medicaid (National Conference of State Legislatures, 2017). Many undocumented minors also need assistance accessing health care services. To meet the needs of these youth, states could adopt policies such as those implemented in New York State.
example, federal and state health agencies, health systems, and insurers can continue to support preventive health visits for adolescents, as well as assignment to a medical home that can provide integrated services (physical and behavioral health).
Creating effective linkages is a means to reduce the problem of stove-piped services, with increasing system coordination through inter-agency collaboration as the most viable approach. Policies that support the coordination and continuity of care, such as improving services to transition adolescents to adult care, need to be implemented universally. With help from federal agencies and designated funding, health care providers, public and private health organizations, and community agencies should work to develop or enhance coordinated, linked, and interdisciplinary adolescent health services. This includes funding community outreach efforts to attract and retain adolescents and their families in the health care system. Adolescents need not only community outreach to enroll in health insurance and create linkages to a medical home, but also tailored follow-up services to assure continuity of services and compliance with necessary medical care.
Finally, to better understand effective methods for delivering coordinated care, federal research agencies (such as the National Institutes of Health) and other research funders should encourage and replicate pilot programs and interventions that aim to decrease fragmentation and alleviate the complicated maze of services for adolescents and their families.
As part of a comprehensive, integrated, and coordinated health system for adolescents, health care providers and health organizations should implement policies and practices that support adolescents’ emerging sense of agency and independence. To prepare for adulthood, adolescents need to learn how to independently navigate the health system and make their own decisions about their health. Health care providers can support this growth by progressively empowering adolescents to meaningfully participate in their health care, in line with their maturity level.
Creating opportunities for adolescents to develop their sense of agency around health is particularly important for socially marginalized adolescents (Patton et al., 2016). Youth who are in the foster care or justice system or experiencing homelessness may be especially vulnerable to risk factors for poor health. In addition, there is a growing recognition that complex health problems will often require multiple interventions of varying intensity and length. These interventions may need to be further tailored for specific subgroups of adolescents who may need different levels of intervention. Such interventions will require an expansion and enhancement of efforts that actively engage adolescents, including increasing their level of knowledge, access, skill development, and personal motivation. Taking this tailored approach, and building upon adolescents’ growing sense of agency, are important means for increasing health equity among the adolescent population.
Likewise, health care providers, public and private health organizations, health insurers, and state governments should ensure that all adolescents receive confidential care for sensitive services. Health care providers, for example, should adhere to confidentiality guidelines developed by the American Medical Association, American Academy of Pediatrics, American Academy of Family Physicians, and the Society for Adolescent Health and Medicine, among others (English et al., 2012). Since the Health Insurance Portability and Accountability Act (HIPAA) of 199617 defers to state laws on key issues of confidentiality for minors (English et al., 2010), state lawmakers play a key role in ensuring the privacy rights of adolescents. At a minimum, policies and ethical guidelines should enable adolescents who are minors to give their own consent for health services and to receive those services on a confidential basis when necessary to protect their health. In addition, states should enact stronger regulations that promote confidential access to sensitive services, such as those adopted in Maine, New York, Wisconsin, and Hawaii.18
However, none of these statutes will solve the problem in its entirety, and alternative pathways for privacy protection, either through laws or health insurance and billing policies, will need to be explored. State departments of insurance, which are charged with protecting consumers and regulating insurers’ business practices within the state (English et al., 2010), may play a key role in protecting confidentiality for minors who use private insurance. For example, they can ensure that explanations of benefits (EOBs) are not sent to the primary policyholder for sensitive services that may have been delivered to an adolescent.
RECOMMENDATION 7-3: Increase access to behavioral health care and treatment services.
Mental health services must be equitably accessible to reduce health disparities among adolescents. A key priority is to increase both access to and utilization of behavioral health care and treatment services. The need to provide behavioral health care to adolescents is pressing: rates of depression, substance abuse, and other behavioral and mental health disorders are increasing among young people. Because of the early onset of many common mental health disorders (Patton et al., 2014) and the consequent impairment experienced later in life (Copeland et al., 2015), it is important
17 HIPAA was passed by Congress in 1996. HIPAA does the following: provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs; reduces health care fraud and abuse; mandates industrywide standards for health care information on electronic billing and other processes; and requires the protection and confidential handling of protected health information.
to consider implementing preventive interventions in early childhood and adolescence, but availability of behavioral health services remains limited.
Availability of services is constrained by both a lack of sufficient providers nationwide and a maldistribution of the behavioral health workforce. Across the country, there are more than 5,000 areas identified as suffering from a shortage of mental health professionals, and more than one-half of U.S. counties, mostly in rural areas, have no practicing psychiatrists or social workers (Kaiser Family Foundation, 2018). Moreover, this shortage is projected to worsen: in 2015, HRSA estimated that an additional 250,000 behavioral health providers will be needed to meet demand by 2025 (Health Resources and Services Administration, 2015). Young people, who are already an underserved population in behavioral health, will feel this shortage keenly.
Currently, the lack of sufficient resources, including providers and funding, and the insufficient integration between behavioral and primary health care prevent many adolescents and their families in need of services from receiving behavioral health care. To address adolescents’ needs for mental and behavioral health services, policy makers and insurers should ensure that behavioral health services are widely available and accessible to all adolescents.
Federal agencies and behavioral health education institutions should work together to grow the behavioral health workforce available to adolescents, particularly those in underserved areas. They can do this, for example, by expanding HRSA’s Behavioral Health Workforce Education and Training Program, which partners with universities and nonprofit organizations to train behavioral health professionals and paraprofessionals with an emphasis on medically underserved populations and integrative care (Kepley and Streeter, 2018). While this program shows promise for increasing the number of behavioral health providers serving youth, it needs to be greatly expanded to meet adolescents’ growing need for integrated behavioral health care. At the same time, HRSA should work to recruit undergraduate students into behavioral health careers by expanding the National Health Service Corps’ scholarship program to include mental and behavioral health providers. The diversity of the future behavioral health workforce is also important to consider in such efforts.
In addition, federal, state, and local policy makers should develop and implement behavioral health programs for prevention, screening, and treatment that better meet the needs of all adolescents, especially programs serving vulnerable groups such as youth in foster care or in detention. Moreover, adolescents should actively participate in program development and implementation. Adolescents’ engagement in planning and shaping the types of behavioral health services, location, and other elements is key in helping to assure that services are more responsive to their needs and
less stigmatized (see Box 7-7 for examples of youth engagement in health programming).
RECOMMENDATION 7-4: Improve the training and distribution and increase the number of adolescent health care providers.
Clearly, there is a need to better prepare health care professionals to feel competent and comfortable caring for adolescents. Significant work is needed to develop a workforce that is comfortable and competent in serving
the health care needs of teens, and in helping them feel welcomed and safe to disclose their concerns. Moreover, with very few physicians and psychiatrists specializing in adolescent health care, there is a pressing need to both increase the number of adolescent medicine specialists and strengthen the skills and competencies of all health care providers who interact with adolescents. To create an adolescent-friendly health system, the training, distribution, and number of adolescent health care providers across the nation must be improved.
Training of health providers is needed at all levels addressing health issues that are particularly relevant to adolescents. These issues include consent and confidentiality requirements, coercive sex, STIs, diagnosis and treatments, behavioral health, sexual orientation, cultural beliefs, immunizations, health promotion and education, counseling techniques, management of victims of violence, and provision of services to special populations of adolescents, such as youth in foster care. New training programs in adolescent health will need to prepare specialists, researchers, and educators in all relevant health disciplines to work with both the general adolescent population and selected groups that require special and/or more intense services. Regulatory bodies for health professions in which an appreciable number of providers offer care to adolescents—such as the American College of Obstetrics and Gynecology, American Academy of Family Medicine, American Academy of Pediatrics, American Academy of Physician Assistants, and state boards of nursing and social work—should include a minimum set of competencies in adolescent health care and development into their licensing, certification, and accreditation requirements. In addition, all pediatricians and primary care providers should have a minimum level of competency in adolescent medicine. Both public- and private-sector funding supporting improved interdisciplinary training and capacity-building among those delivering adolescent health care services will also be needed.
In addition to strengthening the competency of the health care workforce, efforts should be made to increase the number of board-certified adolescent medicine specialists nationwide. As experts in adolescent health care, adolescent medicine physicians are well trained to care for this population (Gilbert et al., 2018). Despite the need for adolescent health care specialists, the field remains small. To address this undersupply, public agencies and private organizations should work together to expand the number of training sites for board-certified adolescent medicine fellowships across multiple academic training centers. At present, there are only 26 training programs in adolescent medicine in the entire country (Society for Adolescent Health and Medicine, 2018). The HRSA, medical and nursing schools, and other key stakeholders should work together to create new pathways for medical students and other health professionals to become adolescent health specialists. More specifically:
- HRSA’s Maternal and Child Health Bureau should fund adolescent medicine fellowships within medical schools across the country to increase the number of adolescent medicine fellowships nationwide.
- HRSA should also add an adolescent health care focus to the National Health Service Corps to bring providers to geographically underserved areas.
- Congress should appropriate funds to HRSA to assess the number, type, and distribution of adolescent health care providers needed to support optimal adolescent health across the country and expand accordingly its Leadership Education in Adolescent Health Program, which prepares health professionals to become leaders in adolescent and young adult health.
- Existing adolescent medicine training sites should offer 1-year clinical training programs in adolescent medicine for those wishing to enhance their expertise in adolescent medicine without becoming board certified.
- Pediatric residency programs should expand their adolescent medicine offerings to increase pediatricians’ proficiency in adolescent health. For example, residency programs could extend the length of the mandatory adolescent medicine rotation or create a combined pediatrics/adolescent medicine residency.
Increasing the diversity of the adolescent health care workforce is also critical to achieving an adolescent-friendly health care system. A previous National Academies report, In the Nation’s Compelling Interest: Ensuring Diversity in the Health-Care Workforce, found that a more diverse health care workforce increases access to care for minority patients, improves patient choice and satisfaction, results in better patient-provider communication, and ultimately can produce better quality of care for all Americans (Institute of Medicine, 2004). Because the current generation of adolescents is the most diverse in U.S. history and evidence shows that adolescents value providers who share their cultural backgrounds, it is even more imperative that the health care system, and systems that train and prepare the health care workforce, strive to increase the diversity of the adolescent health care workforce.
Like the previous National Academies panel, this committee endorses the reduction of barriers to entry for underrepresented minorities to the health professions by reformulating admissions practices so that they consider each applicant comprehensively and the reduction of financial barriers to participation in training through public and private investment.
RECOMMENDATION 7-5: Improve federal and state data collection on adolescent health and well-being, and conduct adolescent-specific health services research and disseminate the findings.
In addition to the efforts the committee recommends to improve service delivery and access to adolescent-friendly health care, the committee recommends improving data collection on adolescent health and well-being and conducting research and disseminating findings on effective adolescent health care practices.
First, efforts should be made to improve federal and state data collection on adolescent health and well-being. The current system for collecting data on adolescents’ health has three gaps:
- what data are collected,
- collection of data on the “whole” adolescent, and
- how the data are used.
The gaps in what data are collected are obvious. Data on key adolescent health indicators among subgroups of adolescents are lacking nationally. On average, data at the subpopulation level are available for about one-third of the 21 health objectives for adolescents identified by Healthy People 2010 (Knopf et al., 2007). Data are particularly limited for low-income, sexual minority, immigrant, and foster care and justice-involved youth (Knopf et al., 2007), although some progress has been made.19 This lack of data impedes national efforts to improve health outcomes for all adolescents and ameliorate health inequities. The Federal Interagency Forum on Child and Family Statistics should work with federal agencies and, when possible, states to organize and disseminate data on the health of and health services for adolescents, including developmental and behavioral health. These data should encompass adolescents generally, with subreports further broken down by age, selected population characteristics, and other circumstances.
Second, the data that are collected on adolescents is frequently uncoordinated and siloed into granular topic areas. By focusing singularly on one or two topic areas of interest, current data collection systems fail to recognize the interrelated nature of adolescent health. This also hinders researchers’ efforts to understand the impact of the social determinants of health on adolescents. Moreover, current data systems are not set up to build a profile of an individual adolescent. However, existing data systems can be built upon to include cross-sectional data. For example, data on an adolescents’ social and behavioral determinants of health could be collected during visits with
19 For example, the 2017 Youth Risk Behavior Survey included a pilot question on transgender identity. See https://www.cdc.gov/healthyyouth/disparities/smy.htm.
their health care provider and recorded in their electronic health record. Including social determinants of health data in electronic health records is essential for improving health care quality, efficiency, and access (Institute of Medicine, 2014).
A previous report from the Institute of Medicine recommended that information on 11 domains of social and behavioral health be collected in patient’s electronic health records (Institute of Medicine, 2014). These domains include neighborhood median income, depression, education, financial resource strain, intimate partner violence, physical activity, social connections and social isolation, and stress (Institute of Medicine, 2014). Pediatric, internal, and adolescent medicine practices nationwide could incorporate these measures into adolescents’ electronic health records.
Finally, there are gaps in the ways in which data are used. It is not enough to have reliable, detailed data on adolescent health. To improve the health of adolescents, data must be used to assess whether existing programs and services are working. State and local health agencies should work with community-level adolescent service providers to identify opportunities for improvement in their programs. The spirit of this quality improvement process should be constructive and collaborative, not punitive.
Federal health agencies and private foundations should prepare a research agenda for improving adolescent health services. The agenda should include
- assessing existing service models to identify promising, evidence-based options, and scale and implement models that work;
- developing new models for providing adolescent-friendly health services that are accessible, acceptable, appropriate, effective, and equitable;
- piloting projects to develop and test innovative approaches for incorporating neurodevelopmental and socio-behavioral sciences in the delivery of health care to adolescents; and
- evaluating the effectiveness of collaborations that bring different sectors together, as well as those that work at the individual, family, community, and policy levels simultaneously.
To complement this research agenda, accelerated sharing of research findings across federal health agencies, private foundations, and the research community is needed. Federal health agencies can promote the widespread dissemination, transfer, and application of knowledge about adolescent development and health and other services for adolescents with their partners. For example, federal health agencies could work with philanthropic partners and other stakeholders to develop learning collaboratives for adolescent health services models. Such collaboratives could provide the
support, training, and technical assistance needed to successfully implement an adolescent-friendly health services model. In addition, private foundations could support the improvement of adolescent health services by funding the development and dissemination of information to policy makers on the cost-effectiveness of prevention programs.