Introduction to the Special Issue on Adolescent and Young Adult Health: Why We Care, How Far We Have Come, and Where We Are Going

Abstract

This special issue on adolescent and young adult (AYA) health comprises 15 original articles. The special issue recognizes the importance of AYA-focused research, highlights unique issues across the AYA period, and showcases cutting-edge research focused on AYAs. We describe the rationale for focusing on the AYA population, themes of the special issue, and future directions.

The Importance of Adolescent and Young Adult Health

Research in emerging adulthood and neuroscience has demonstrated that the adolescent and young adult (AYA) developmental period is socially, physically, and neurologically unique, indicating this age group warrants focus independent of younger or older cohorts (Arnett, 2000; Lansing & Berg, 2014). AYAs experience changes in almost all domains of life, particularly in social roles and relationships, as they begin to establish autonomy from the family of origin (e.g., living independently; starting financial independence), enhance peer relationships, and pursue intimate romantic relationships (Arnett, 2000). Further, adolescence and young adulthood is a critical time for the onset of mental health difficulties. Three-quarters of all mental health disorders have their initial onset before age 24 years (Kessler etal., 2005). Risk-taking behaviors are prevalent, with AYAs often engaging in health-harming behaviors that persist through adulthood and have long-term negative health effects (Park, Scott, Adams, Birndis, & Irwin, 2014; Sawyer etal., 2012). AYAs with and without chronic illness also undergo changes in their interactions with the health-care system, and many struggle with the transition into adulthood and adult health care (Devine, Monaghan, & Schwartz, 2017; Pai & Schwartz, 2011).

Despite the unique challenges and developmental status of AYAs, they historically have been underrepresented in pediatric psychology research. AYAs had not been characterized as a unique group of focus, and young adults were often not included in pediatric studies. Until recently, relatively few articles in pediatric psychology elucidated the unique changes, processes, and challenges of adolescence and young adulthood, which have long-term implications for well-being and health in adulthood.

Fortunately, in the past 15 years, there has been an increased focus on AYA health in pediatric psychology. The Journal of Pediatric Psychology published its first special issues on adolescent health and illness in 2002 (Holmbeck, 2002). The current special issue expands on that work to recognize the importance of AYA-focused research, highlight unique issues across the AYA period, and showcase cutting-edge research focusing on AYAs. The call for papers was deliberately broad, soliciting high-quality manuscripts addressing health and development from early adolescence through young adulthood. We received dozens of submissions, signaling a commitment of the field to understand and intervene on the challenges experienced by AYAs with chronic health conditions and health vulnerabilities.

How Far We Have Come: Themes Reflected in This Special Issue

The 15 articles comprising this special issue represent a rich and diverse body of research that make significant contributions to our understanding of AYA health. Consistent with the issue’s broad focus on adolescence and young adulthood, there is an impressive breadth of content across the studies’ varying age ranges, populations, and methodologies. The study samples range from young adolescents (Psihogios, Murray, Zebracki, Acevedo, & Holmbeck, 2017) to young adults up to 30 years of age (Porter, Wesley, Zhao, Rupff, & Hankins, 2017). This special issue includes articles representing diverse populations, including type 1 diabetes (Butler etal., 2017; Goethals etal., 2017; Hilliard, Iturralde, Weissberg-Benchell, & Hood, 2017; Pierce etal., 2017), cancer (McGrady, Peugh, Brown, & Pai, 2017; Schwartz etal., 2017), chronic pain (Ahola Kohut, Stinson, Forgeron, Luca, & Harris, 2017; Chan, Connelly, & Wallace, 2017), spina bifida (Psihogios etal., 2017), sickle cell disease (Porter etal., 2017), cystic fibrosis (Helms, Christon, Dellon, & Prinstein, 2017), HIV (Raymond etal., 2017), autism spectrum disorder (Cheak-Zamora, Teti, Maurer-Batjer, & Koegler, 2017), major depressive disorder (Rapp, Chavira, Sugar, & Asarnow, 2017), and AYAs without chronic conditions (Sharkey etal., 2017). Methodological diversity is showcased through rigorous, developmentally informed research approaches, including AYA-specific measurement development and evaluation (Hilliard etal., 2017; Pierce etal., 2017; Raymond etal., 2017; Schwartz etal., 2017), qualitative analyses (Ahola Kohut et al., 2017; Cheak-Zamora etal., 2017), mediation and moderation analyses (Butler etal., 2017; Chan etal., 2017; Sharkey etal., 2017), mixed methods (Helms etal., 2017; Porter etal., 2017), longitudinal studies (Psihogios etal., 2017), health services research (McGrady etal., 2017; Rapp etal., 2017), and the use of large data registries (Butler etal., 2017; Goethals etal., 2017). Further, studies use multiple informants to capture the changing roles of parents, as youth move toward increasing independence in tasks of disease management and daily living (Cheak-Zamora etal., 2017; Goethals etal., 2017; Psihogios etal., 2017). We highlight some important content and methodological themes below that stood out in this special issue.

Factors Associated With AYA Self-Management and Related Health Outcomes

Individual and Family Factors

Many articles highlighted individual and family factors associated with disease management. Psihogios and colleagues (2017) applied sophisticated analyses to tease apart specific youth and family factors predicting adherence and child responsibility for disease management in young adolescents with spina bifida. Results highlighted the myriad of factors that can impede developmentally appropriate execution of disease management tasks. Goethels and colleagues (2017) found that responsive (warm, supportive) parenting characteristics were associated with better diabetes self-management across a large sample of AYAs with type 1 diabetes aged 14–25 years. In comparison, psychological control was problematic for diabetes self-management, particularly at older ages, supporting the importance of positive parenting interactions into young adulthood. Butler etal. (2017) examined race/ethnicity as a moderator between stress and glycemic control in a large registry sample of AYAs with type 1 diabetes, with the strongest associations emerging for Hispanic youth. Finally, Chan etal. (2017) conducted path analyses to understand directional relationships among pain, distress, and social outcomes for teens; symptoms of depression and anxiety mediated the relation between pain interference and social dysfunction in teens with chronic pain. Together, the studies underscore the importance of applying a biopsychosocial framework and using sophisticated analyses to disentangle complex relationships and pathways, ultimately identifying targets of intervention, when evaluating health and disease management in AYAs.

Resilience-Related Constructs

Several papers focused on positive constructs related to health outcomes. Sharkey etal. (2017) found that health-care management skills mediated the relationship between grit and health-related quality of life (HRQOL) among college students without chronic health conditions. Grit is a trait most commonly studied in education and characterized by perseverance and passion for long-term goals. Findings suggest that targeting skill development may improve HRQOL in relatively healthy young adults. Findings also indicate a valuable future direction exploring the role of grit in disease self-management skills of AYAs with chronic conditions. Hilliard and colleagues (2017) developed a new measure focusing on strength and resilience among adolescents with type 1 diabetes. The measure consisted of two positive factors—confidence in one’s ability to manage diabetes and access to support from close others. AYA self-report responses were associated with key clinical outcomes, highlighting the importance of attending to strengths of AYAs and their families as variables associated with health outcomes. Finally, Ahola Kohut, Stinson, Forgeron, Luca, and Harris (2017) took a novel approach by evaluating the benefits reported by young adult peer mentors in an intervention (reported elsewhere) with adolescents with chronic pain or juvenile idiopathic arthritis. Although the peer mentors were not the target of the intervention, they reported personal growth and improvements in their own self-management skills as a result of serving as a mentor to other AYAs. Thus, peer mentoring is a novel intervention that seems to benefit both the mentor and mentee.

Rigorous Measure Development

Historically, the availability of measures relevant to AYA samples has been a challenge, given the lack of tools specific to the age range traversing adolescence and adulthood and the lack of developmentally sensitive measures focused on constructs and milestones specific to this group. The current issue advances the field by emphasizing methodological rigor for measurement development at all steps in the process and expanding assessment areas for AYAs. Pierce etal. (2017) used qualitative methods to gain stakeholder feedback about transition outcomes to inform content of a new transition outcome measure. Their approach was theoretically informed and builds on their prior work (Pierce & Wysocki, 2015) expanding the Social-ecological Model of AYA Readiness to Transition (SMART model; Schwartz etal., 2013) to outcomes of diabetes transition. Schwartz etal. (2017) described development of a new theoretically informed transition-readiness tool, also guided by the SMART model and rigorous NIH PROMIS methods (Forrest etal., 2012). This process involved validating a model, developing items, and testing those items with multiple stakeholder feedback to establish content validity of an initial item pool that is ready for large-scale validation. These two transition-focused papers elicited multiple stakeholder feedback and highlighted the complexity of transition components and outcomes. Hilliard etal. (2017) demonstrated rigorous psychometric evaluation of a new measure of AYAs’ diabetes strengths and resilience related to overcoming challenges. This article provides an excellent example of confirmatory factor analysis to demonstrate the psychometric soundness of the measure and further validate it. Raymond etal. (2017) evaluated the use of unannounced pill counts as a novel measure of adherence to antiretroviral therapy among AYAs with HIV, highlighting the adaptation of flexible assessment approaches to attain ecologically valid data and engage high-risk AYAs in their everyday life. Together, these papers highlight the importance of theory, multiple informants, rigorous statistical design and methods, and developmental sensitivity critical to sound measurement development and assessment with AYAs.

Transition to Adult Health Care

In addition to the transition measurement studies described above, two studies used qualitative methods to explore perspectives on health-care transition among AYAs with sickle cell disease (Porter etal., 2017) and AYAs with autism spectrum disorder and their parents (Cheak-Zamora etal., 2017). These insightful studies offer AYA-informed suggestions for transitional supports, including improving communication among AYAs, parents, and health-care providers, and enhancing youth skills associated with autonomy and self-efficacy. These articles also highlighted similarities and differences in perspectives among multiple informants, and demonstrated the importance of eliciting perspectives of AYA patients at early stages of transition program development.

Health-Care Providers and Delivery of Care

Another novel aspect of this special issue is a focus on provider and health-care system issues, including differences in patient and provider perspectives of communication about body image for AYAs with cystic fibrosis (Helms etal., 2017), evaluation of integrated care service use among AYAs with depression (Rapp etal., 2017), and hospital care spending among AYAs with cancer (McGrady etal., 2017). Helms and colleagues highlighted the importance of multiple stakeholder perspectives and nuances of effective communication with AYAs that have implications for other health topics and chronic conditions. Rapp etal. demonstrated the value of integrated care for improved access and uptake of care, particularly related to AYA-specific barriers to mental health care. McGrady and colleagues presented an early step to examine cost-effectiveness of pediatric psychology services by showing that AYAs with behavioral/psychosocial difficulties warranting service use had almost double the hospital care spending than AYAs without such difficulties. Together, these papers underscored the importance of broader health-care system influences on AYA health and the need for researchers and clinicians to document how our pediatric psychology interventions can improve access and quality of care, and potentially yield cost savings.

Where We Are Going: Future Directions

Expand Diversity and Age of AYA Samples

While diversity in racial/ethnic background and disease/disorder was represented in this special issue, there remains a need to expand diversity in AYA research. Normative stressors experienced during adolescence and young adulthood, especially for youth with a chronic health condition, may be exacerbated by minority status, including racial/ethnic status, sexual and gender orientation, level of acculturation, and religion (Arnett, 2003; Gomez, Miranda, & Polanco, 2011; Sue etal., 2007). Research has shown poorer adherence (Bhatia etal., 2014; Hilliard, Wu, Rausch, Dolan, & Hood, 2013) and less access to optimal care (Kane etal., 2009; Richmond, Tran, & Berry, 2012) among AYA minorities. Thus, research is needed (such as Butler etal., 2017) to understand how minority status may impact optimal disease self-management and access to care. Further, it is critical to expand AYA research to other chronic health conditions that are especially underrepresented in AYA research and in this special issue, such as developmental disabilities, food allergies, musculoskeletal degenerative disorders, congenital heart disease, obesity, and transplant recipients, as well as never ill populations at risk for poor health promotion and outcomes.

Several papers in this special issue included young adults into their late 20s to inform the full spectrum of AYA development and outcomes (McGrady etal., 2017; Porter etal., 2017; Raymond etal., 2017). Continued expansion of pediatric psychology research with young adults is essential for a life span approach that recognizes the long-term impact of childhood disease and health and how pediatric psychology interventions impact physical and psychosocial outcomes in early adulthood. To achieve this, longitudinal studies are needed to track pediatric populations across transitions such as leaving pediatric-oriented care and families of origin and entering the workforce. We need to know outcomes during these transitions to inform earlier targets of intervention. Our value as pediatric psychologists is fully realized when we demonstrate lasting improvements of youth surviving to adulthood.

Increase Focus on Health Promotion and Prevention

While pediatric psychology has traditionally focused on targeting youth with chronic health conditions, there are many compelling reasons why we should also focus research on never ill AYAs. Risky or harmful health behaviors in this group may have lasting implications for adult health (Park etal., 2014; Sawyer etal., 2012). For example, there is increasing evidence to suggest that childhood is a key period of carcinogenic vulnerability and that modifiable health behaviors that begin or become solidified in adolescence may affect risk for adult cancer (Fuemmeler, Pendzich, & Tercyak, 2009; Wild, 2011). As another example, the transition between adolescence and young adulthood is a risky period for weight gain and a decline in related health behaviors such as regular physical activity and healthy eating (Nelson, Story, Larson, Neumark-Sztainer, & Lytle, 2008). Pediatric psychologists’ expertise in understanding the interplay between development, behavior, and health can help advance science on improving health promotion and prevention of health problems and accidents for vulnerable AYAs. Targeted interventions sensitive to the developmental challenges inherent in the AYA period are needed to prevent the onset of chronic conditions in adulthood and ensure a trajectory of healthful rather than harmful behavior.

Develop Empirically Validated Measures Specific to the AYA Period

While the articles in this special issue contribute to the growing collection of AYA measures, there remain too few AYA-specific measures. The lack of valid AYA measures that are sensitive to this developmental period hinders the ability to adequately assess unique AYA problems, identify targets of intervention, track changes across the AYA period, and evaluate outcomes (Schwartz etal., 2013). Most AYA researchers use child and adult measures in the same AYA study, or limit assessment to either child or adult measures, thus using measures that may not be valid and as relevant for a portion of their sample. Further, parents continue to exert influence on health behaviors in AYAs; yet, parent-report measures often are not available or tailored to the types of support offered during this period. AYA-specific measures need to be thoroughly vetted and tested with AYA samples to assure that items are relevant across the developmental period and face valid in their assessment of a relevant construct for AYAs. AYA measures may also optimize their relevance to the age range by being flexible, allowing for respondents to opt out of items not relevant (e.g., a school item for a working young adult), or having diverse response options that capture the various components of a concept (e.g., living situation item capturing a range of options such as living at home all the time, away from home with friends, in a dorm part time, and so forth).

Translation and Innovative Interventions

This special issue was lacking interventions, especially randomized controlled trials, reflecting the overall state of the literature. Specifically, few interventions have been designed for and tested with AYAs, and even fewer have been tested via randomized controlled trials (Sansom-Daly, Peate, Wakefield, Bryant, & Cohn, 2012). As we learn more about barriers to optimal health for AYAs, whether they have a chronic illness or not, findings need to be translated to intervention development, especially given the documented unmet needs of AYAs. It is also important to note that sustained engagement with AYAs is a challenge, given they are transient, present-focused, and busy, while also less influenced by parent directives. Successful interventions with AYAs should be tailored, innovative, and flexible to maximize impact (Cushing & Steele, 2010). For example, interventions that include mobile/eHealth, social medial/social networks, or virtual reality/simulation are likely to be more effective with AYAs than traditional interventions that consist of multiple in-person sessions only (Cushing, 2017; Fedele, Cushing, Fritz, Amaro, & Ortega, 2017). Furthermore, research has shown greater impact when parents were included in interventions (Cushing & Steele, 2010; Sansom-Daley etal., 2012). It will be important to engage AYAs early in the intervention development process to ensure that interventions are targeting behaviors of interest to them and delivered using technologies and methods that are acceptable, feasible, and sustainable.

Health Services Research

Given that AYAs are often “caught” between pediatric and adult health care, it is critical to understand how health system factors influence access to and quality of care for AYAs. Patients and families perceive a number of differences between pediatric and adult health care, including the family-centeredness of care, pace of visits, provider knowledge of pediatric-onset conditions, organization of care (e.g., multidisciplinary pediatric clinics vs. separate appointments by discipline), and communication across health systems (Reiss, Gibson, & Walker, 2005). Pediatric psychologists can advance the field by evaluating how models of care influence receipt and effectiveness of care. As demonstrated by Rapp and colleagues (2017), integrated care offers one possibility to increase AYAs’ access to and engagement in mental health services. However, more work is needed to expand integrated care models across primary and specialty care and into adult medical care systems. Further, in the current period of health-care reform and policy changes related to health insurance coverage, it is critical to understand the impact of such changes on AYA health outcomes and access to care. Multidisciplinary teams are especially critical for this type of research to assess impact at all levels of social ecology, from policy to community to individual outcomes in physical and mental health. Pediatric psychologists can also help to advocate for AYAs with special health-care needs who may be detrimentally affected by policy changes related to coverage via parental insurance until age 26 years, existing health conditions, and lifetime spending caps (Blumenthal & Collins, 2014; Sommers, Buchmueller, Decker, Carey, & Kronick, 2013). Finally, pediatric psychologists may need to partner with health-care economists and policy makers to evaluate the cost-effectiveness of AYA interventions and advocate for unique AYA interventions in the health-care system (McGrady etal., 2017).

Conclusion

In conclusion, the diversity of topics, methodological designs, and conditions covered in this special issue demonstrates significant progress in understanding challenges, targets of intervention, and assessment of AYAs with health conditions or health vulnerabilities. As evidenced by the papers in this issue, the field has made great strides in rigorous measure development and has begun to identify targets for intervention (e.g., health-care management skills, emotional functioning, communication skills, and family stress). Disease self-management remains a significant issue among AYAs, and multiple levels (i.e., individual, social, and system) of intervention may be most effective. The transition from pediatric to adult health care was also highlighted in this issue, emphasizing the need for multiple stakeholder perspectives and attention to defining and measuring posttransition outcomes. Finally, these articles emphasize the importance of team science and collaboration across disciplines and health-care settings (i.e., primary care; specialty care). Strong partnerships at all levels, including between AYA patients and health-care providers, between psychologists and physicians, and between pediatric- and adult-care providers, are essential to meet the complex needs of AYAs with chronic conditions and promote optimal health and well-being.

Funding

This work was supported by the National Cancer Institute and the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health (K07CA174728 to K.A.D. and K23DK099250 to M.M.). The content is solely the responsibility of the authors and does not necessarily represent the views of the National Institutes of Health.