Health Care Transitions for Adolescents

Consensus clinical reports and emerging qualitative data on HCT have demonstrated that the key indicators of successful HCT include 3 distinct components: transition planning, transfer of care, and integration into adult care. Central to transition planning is building the ability to manage key aspects of one’s health care needs, a metric often referred to in the literature as self-management or “transition readiness.”^2,3,6  Transition readiness assessment includes ongoing evaluation and promotion of self-management among youth in the following health-related domains: understanding of their medical needs, navigating insurance, financial considerations, managing prescription medications, and scheduling appointments. Common barriers to self-management of these critical components often include lack of motivation to learn skills that parents already perform, parental reticence to turn over responsibility, and systemic challenges associated with being a minor.

Because strengths and areas for improvement in each of these domains can vary according to each patient’s unique experiences and functional autonomy, best practices mandate direct involvement of AYA in transition planning and coordination to ensure that their perspectives are understood, and that transition planning is responsive to their individual self-identified needs. One practice shown to maximize both patient satisfaction and promote evolving autonomy and the development of self-management in a deliberate, developmentally appropriate way, is the provision of alone time with providers.^7,8  In addition to alone time, effective assessment and planning best practices include integration of 1 of the standardized readiness assessment questionnaires such as Transition Readiness Assessment Questionnaire with ongoing assessment and planning at each visit starting at 12 years of age.²  Although these practices are an integral component of transition planning with AYAs, these visits alone are not sufficient for comprehensive transition planning and assessment of transition readiness represents only 1 key component of the larger construct of a coordinated collaborative transition framework.

The next critical phase of health care transitions is the process of HCT. For young adults in the process of transferring to an adult practice, a transfer checklist should be provided to the adult provider that includes a medical summary, latest transition readiness assessment, plan of care, and legal documents (if necessary for AYA with SHCN and intellectual and developmental disabilities).⁸  Finally, effective HCT requires deliberate practice integrating AYAs into adult models of care through ongoing assessment of self-management skills to support developing functional autonomy.³ 

Given these complexities, collaboration across multiple health care systems in the HCT process is essential. As such, transferring and receiving primary care and subspecialty providers represent central figures in the HCT process. However, the integration of additional personnel represents an opportunity to extend the reach of clinicians and strengthen health care systems’ ability to support HCT in a patient-centered way. For more detail on emerging multidisciplinary strategies, please see Current Advances section.

Commensurate with advances in medical care, life expectancy for AYAs with chronic medical conditions and SHCNs is extending increasingly into adulthood. As such, transition to adult care for AYAs with SHCNs is critical to minimize negative health outcomes that can occur in this time of medical vulnerability. A 2020 position paper from the Society of Adolescent Health and Medicine outlines priorities for systemic improvements in HCT for youth with SHCN, which include education on transition-related needs with particular focus on social determinants of health, multidisciplinary team-based support, and technological innovations.⁹  Further, in 2017, The Maternal Child Health Bureau established a national research network, the Children and Youth with Special Health Care Needs National Research Network, which identified HCT as a top research priority for youth with SHCN to continue with the development of evidence-based guidelines.¹⁰  Although ongoing management of active medical needs is critical to effective HCT, future HCT guidelines and the research that informs them should include an expansive view of the ongoing need for health prevention and promotion particularly in youth with SHCN.

Data have shown that 50% of patients with mental illness begin experiencing symptoms by 14 years of age and 75% by 24 years of age.¹¹  Thus, adolescence and young adulthood represents a time when people are most vulnerable to mental ill-health impact and any disruption in mental health support at that time increases the risk for functional decline and worsening mental health outcomes.^6,11  To support youth with mental health care needs through that transition, the American Academy of Child & Adolescent Psychiatry has established an online resource for youth titled the “Moving into Adulthood Resource Center.”¹² 

Adolescents and young adults without SCHNs, particularly young men, are historically a population that underuses primary care. This limited interface with primary care and medical care in general poses unique challenges to the planning and coordination of HCT. Emerging research on HCT for youth without SHCN demonstrates less self-management in completing medical tasks than peers with SHCN. Additionally, providers have been shown to be less likely to discuss future topics around transition in youth without SHCN.¹³  For that reason, considerations of HCT should be integrated into any medical engagement with AYAs regardless of SHCNs, including not only primary care, but also urgent care, subspecialty care, and emergency services.

As an intervention historically housed in the clinical encounter, and 1 that involves multiple interactions with the medical enterprise, effective HCT has the propensity to be concentrated in high-resource areas. Furthermore, the focus on developing skills in financial management, systems navigation, and health literacy, which are central to HCT planning, if not done equitably, has the potential to further exacerbate underlying health disparities along racial, ethnic, and socioeconomic lines. Although limited data exist on HCT planning in underserved families, further systems-level research and community engagement designed to elucidate both the particular needs and barriers to health care transition equitably is imperative (Table 1).

One means through which certain clinics have systematized the approach to HCT is by developing interprofessional transition care teams. Through using an interprofessional team with expertise in and dedicated time for providing transition readiness assessments and promoting self-management, such programs hold promise to improve provision of transition services to AYAs. The composition of these teams varies by location, spanning from comprehensive teams of medical providers, nursing staff, social workers, and program managers working collaboratively, to independent nurse-led visits dedicated solely to optimization of HCT.

Without the comprehensive interdisciplinary team, some clinics and medical centers have used Transition Navigators as liaisons to families embedded in a primary care or subspecialty clinic. The Transition Navigator Model is a promising intervention that introduces care navigators to support patients and families to more effectively navigate HCT transitions.¹⁴  In addition to the professionals guiding patients and families through transition preparedness, another modality undergoing evaluation is the integration of peer educators. Peer educators, as AYAs with SHCNs who have navigated the transition themselves, offer a unique perspective and approach to fostering self-management skills in AYAs and can provide useful wisdom based on their lived experience. Although guided by national guidelines, these interventions and other, similar programs are often designed by and to meet the needs of specific institutions and have not yet been adopted widely. Thus, ongoing research in all of these methods will be integral to determine the efficacy and adaptability of these models to other care avenues.

Outside of personnel interventions, 1 of the more commonly adopted technological tools to improve HCT involves harnessing preestablished workflows built within EMRs. EMR-embedded transition workflows and Best Practice Advisories have long been integrated into practice and have been studied as a useful tool for many pediatric academic medical centers to track HCT readiness assessments and planning longitudinally. Although these systems are effective for patients established in clinical care, they also have the potential to identify patients without recent clinical touch points who would benefit from transition assistance, for example, AYAs without SHCNs. Such systems can use direct-to-patient messaging to educate patients on both the need for HCT and the resources available for transition support regardless of whether they have recently seen a provider. Additionally, with the rapid expansion of telemedicine brought on by the COVID-19 pandemic, many programs have used telehealth services to extend the reach of the clinician with respect to HCT services. In doing so, these approaches hold promise to ensure that youth with and without SHCNs are informed of and have equitable access to transition services. Finally, another means through which technology can reach more youth for HCT readiness is through the development and integration of apps. One such app, MyTransition, has been designed to support AYAs through the transition process by promoting self-management and health advocacy.¹⁵  Although the app is currently undergoing evaluation as a tool, it provides a promising avenue for patients to assess their readiness, complete a health passport, and relay information about their medical history and treatment plans to future providers using a medium, cellular phones, which youth are very familiar with and adept at using.

Despite the advances described, the implementation of comprehensive transition care plans remains limited by the expertise of the providers coordinating services. Acknowledging the gaps in medical training, several medical schools, and GME training programs in internal medicine, med-peds, and pediatrics have begun to integrate transition education into their curricula to ensure that the next generation of medical providers is prepared to meet this important care gap.¹⁶  For providers currently in practice, several online continuing medical trainings and toolkits have been developed to improve knowledge and skills, and are widely accessible from the Got Transitions resource webpage.² 

Opportunities to improve the HCT of AYAs with and without SHCNs to adult health care is currently limited by the competing demands of clinical encounters. Efforts have been made to educate providers on the billing codes to ensure providers are compensated for their HCT efforts. Future Centers for Medicare & Medicaid Services and private insurer evolution toward outcome-based care that supports care coordination would strengthen the financial incentive to promote evidence-based HCT. Such reforms hold potential to make evidence-based approaches to HCT more sustainable, with the promise of better outcomes, greater satisfaction, and lower costs for the health care system.¹⁷ 

Although the need for appropriate and effective HCT planning is clear and well-established by consensus statements both domestically and internationally, the methods with which HCT planning is provided vary widely across health care systems. Because of this, comparative analyses and data on the relative efficacy of the previously mentioned novel innovations are limited. The data that exist on coordinated HCT shows a positive impact on adherence to care, disease-specific measures, quality of life, self-care skills, satisfaction with care, health care use, and HCT process of care.¹⁸  To meet the needs of AYA, limit health care challenges in this time of vulnerability, and move the field forward in creating standardized evidence-based best-practice guidelines on optimizing HCT, ongoing research on innovative approaches is imperative.

AYA

adolescent and young adult

EMR

electronic medical record

HCT

health care transition

SHCN

special health care needs