Background and Objective for Systematic Review

In the United States, nearly 20 percent of children under age 18 have special healthcare needs,¹ defined as having or being at increased risk for chronic physical, developmental, behavioral, or emotional conditions—and this population is growing.² Often, these children will require lifelong health-related services. Between 2011 and 2017, an estimated 4.5 million children with special healthcare needs (CSHCN) ages 12–18 transitioned or prepared to transition from pediatric to adult healthcare providers.³ Such transitions are often difficult and can lead to gaps in care, adverse health outcomes, and frustration for patients and families.^3–5 Therefore, identifying the most effective interventions to improve healthcare transitions and outcomes for CSHCN is critical. This need is further underscored by prioritization of healthcare transitions as a Healthy People 2030 research objective⁶ and inclusion as a performance measure in state and federal programs.⁷

Previous reviews of literature on interventions for healthcare transition in CSHCN have called for new research to rigorously examine the effectiveness of programs or services, while noting that the few existing studies mostly fail to use rigorous study designs, leading to a weak evidence base.^{5, 8} Some of the difficulty stems from lack of clarity around managing transitions, particularly as no globally accepted definition exists for effective transition from pediatric to adult medical care. In 2011, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians sought to address this issue by publishing a framework for implementing care transitions for youth (starting in early adolescence) to aid clinicians in transition within their medical home.⁹ In this report, they define the goal of healthcare transition as “maximizing lifelong functioning and well-being…[thereby] ensuring that high-quality, developmentally appropriate healthcare services are available in an uninterrupted manner as the person moves from adolescence to adulthood.”⁹ Subsequently, Got Transitions^® (a federally funded national resource center on healthcare transitions) developed a structured clinical quality improvement approach for transitioning patients from pediatric to adult medical care. One of several models for managing transitions, Got Transitions approach is called “Six Core Elements of Health Care Transition.” This approach is customizable across many transition care models^{10, 11} and includes transition policy, transition tracking and monitoring, transition readiness, transition planning, transfer of care, and transfer completion. ¹²

Healthcare providers have integrated the Six Core Elements into practice in various ways, including direct interventions for healthcare transitions with children and their caregivers, implementation strategies such as provider training, and tools to facilitate communication between pediatric and adult providers. However, the broad spectrum of included components targeted within the Six Core Elements has raised questions about the best transition intervention designs, implementation tools, and strategies to address these complex transitions. Questions persist around whether/how intervention and participant characteristics affect outcomes of specific approaches, and whether/how those approaches could be improved. Characteristics that might affect transition outcomes include patient demographics (e.g., age, ethnicity, immigration status), capacity for self-management (e.g., health literacy, prior healthcare attendance), condition type and severity, provider/hospital features (e.g., access to specialty services, specialty training) and care setting (e.g., specialty center, telemedicine).^13–15

While CSHCN often experience significant barriers to effectively transitioning from pediatric to adult medical care,^{4, 14, 16, 17} the lack of rigorous evaluation of interventions and strategies to reduce these barriers may hinder widespread development and dissemination of policies and programs for this population, as has been highlighted in previous evidence reviews.^{18, 19} Further, interventions vary widely in their components, structure, and processes,³ and might also lack effective tools or engagement to address the needs of culturally diverse populations. Measures of successful transition also vary widely across study populations and interventions, raising questions about how best to assess transition interventions. Finally, providers who care for CSHCN face persistent uncertainty about effective programs and practices, as well uncertainty or inconsistency about incentives to engage in transition care (e.g., reimbursement, capacity, training) across settings and specialties (e.g., primary care).²⁰ Identifying and understanding intervention characteristics that lead to more successful transitions will help patients, caregivers, and providers make more informed decisions about which interventions (or components) might work for whom and under what circumstances.

Purpose and Scope

The National Cancer Institute (NCI) requested this review as part of a series of projects for The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, which is devoted to advancing the state of science and improving the healthcare and quality of life for children and adolescent cancer survivors. Because NCI anticipated limited research on healthcare transitions specific to pediatric cancer, our review examined transitions to adult healthcare for all CSHCN. The target audience for this review includes not only CSHCN, their families, caregivers, and providers, but also policymakers, all of whom rely upon current evidence for interventions to support healthcare transitions for CSHCN. The key decisional dilemmas addressed by the review include the effectiveness and harms of 1) healthcare interventions targeted toward CSHCN and their families/caregivers, 2) strategies to implement interventions for healthcare transitions including provider-related training, and 3) tools to facilitate communication between pediatric and adult providers. Further, this review discusses definitions and measures for effective healthcare transition for CSHCN, training and implementation strategies available to prepare pediatric patients, their families, and healthcare providers for transitioning to adult medical care (including culturally competent strategies), and strategies to increase the availability of adult care providers in the transition process.

The Research Questions

This review addressed three Key Questions (KQs) to evaluate the effects of interventions for transition from pediatric to adult services for children with special healthcare needs. Healthcare transition interventions can be complex or multicomponent, including behavior changes on the part of patients and care providers. Therefore, the review included a question to help understand barriers and facilitators for such interventions. We also included a set of Contextual Questions (CQs) to provide information on the context within which care transitions happen. KQs and CQs were developed based on National Cancer Institute priorities and input from technical experts, with further feedback and refinement received during a public comment period.

Population, Intervention, Comparator, Outcome, Timing and Setting

Table 1.1 provides detailed information on the populations, interventions, comparators, outcomes, timing, and settings (PICOTS), and include criteria used for inclusion of studies in the review based on Key Questions.

Table 1.1

Population, intervention, comparator, outcome, timing, and setting (PICOTS).

Analytic Framework

Figure 1.1 shows a visual representation of the analytic framework for the Key Questions, illustrating the relationship of interventions and outcomes.

Figure 1.1

Analytic framework.

Report Organization

Chapter 2 outlines the methods used to conduct this systematic review. Chapter 3 presents the overall results of the search for the review’s eligible studies. Beginning in Chapter 4, we present results for KQ 1 (overall and by condition group), followed by outcome findings. Chapter 5 presents aggregated results for KQs 2 and 3. Chapter 6 presents a summary of overall barriers and facilitators to interventions. Chapters 7–11 present results from each of the Contextual Questions, with results for CQs 4 and 5 grouped in Chapter 10. Following this is the discussion including research gaps and future research considerations in Chapter 12. A glossary of terms for the report is provided in Table 1.2.

Table 1.2

Glossary of terms.