Evidence Tools
Health Care Transition

Emerging:

• Directory of Resources (National; 2023)
• Interagency Transition Coalition (CO; 2012)
• Youth Leadership Development (RI; 2012)
• Youth Advisory Council (RI; 2018)
• Parent and Teen Education (WI; 2022)

Promising:

• Adolescent-Centered Care Model (National; 2018)
• HCT within a Managed Care Plan (DC; 2016)
• Teen Consultant Program (WI; 2020)
• Workplace Internship for Youth (RI; 2018)

Best:

• Electronic Medical Record HCT Planning Tool (TX; 2019)
• High School Transition Program (OR; 2011)
• Teen Educator Program (WI; 2020)

KEY FINDINGS

• Of the 26 included studies, pediatric-to-adult HCT interventions primarily occurred in clinic- (n=13; 50%) or hospital-based (n=6; 23%) settings, or a combination of both clinical and hospital settings (n=5; 19%). Two studies (n=2; 8%) were conducted in community-based settings. One study took place at a mental health services agency, and the other study occurred in the home.
• All included studies (100%) focused on youth with SHCN or chronic medical conditions (singular or multiple health conditions). The most frequently studied health conditions were Type 1 diabetes (n=6; 23%) and inflammatory bowel disease (n=6; 23%). No studies examined transition for non-YSHCN.
• The recommended HCT process includes components related to planning for transition, transfer assistance, and integration into adult-centered health care, as well as activities that indicated use of care coordination. a. Most interventions were multicomponent (n=23; 88%) (e.g., A + B + C + D (planning for transition + transfer assistance + integration into adult care + care coordination). b. Twenty-three of 26 studies (88%) included transfer assistance. c. Studies that looked at single-component interventions focused only on planning for transition (n=3; 12%).8 d. One of the 26 studies (4%) did not include planning for transition.
• Specific intervention activities were identified within each of the three components, as well as activities that indicated use of care coordination (Schmidt et al., 2020).
  • a. For transition planning, the most mentioned intervention activities were disease education/ skill building (n=19; 73%); plan of care/medical summary/electronic medical information (n=16; 62%); and transition readiness/self-care skills assessment (n=10; 38%).
  • b. For transfer assistance, the most mentioned intervention activities were identifying an adult provider/scheduling assistance (n=15; 58%); letter of referral/coordination of referrals (n=13; 50%); communication between pediatrician and adult provider/joint pediatric and adult meetings (n=13; 50%); and transfer summary sent from pediatrician or shared with new adult provider (n=11; 42%).
  • c. For integration into adult care, the most mentioned intervention activities were scheduling assistance/ follow-up with patient after adult first visit/ monitoring appointments (n=10; 38%); ongoing care (n=5; 19%); and patient/family feedback on transition process (n=4; 15%).
  • d. Eleven of 26 studies (42%) gave an indication of use of care coordination.
• HCT interventions tend to result in positive outcomes related to the triple aim domains of population health (improvement in adherence to care, disease-specific measures, self-care skills, quality of life, and selfreported health); patient experience of care (increase in satisfaction and reduction in barriers to care); and utilization (decrease in time between last pediatric and first adult visit, increase in adult ambulatory visits, and decrease in hospital admissions and length of stay).
  • a. Most of the positive outcomes were related to population health (n=23; 88%), followed by improvements in utilization and cost of care (n=18; 69%). Patient experience of care was measured in 6 of the 26 studies (23%).
  • b. One study (4%) measured all domains of the triple aim framework.
  • c. Across all domains, 25 of the studies (96%) reported positive effects in favor of the intervention, with these same 25 studies (96%) also reporting statistically significant findings.
• The ability to compare studies was limited due to variability in the intervention design, comparison group, setting, and outcome measures. Although similar studies were grouped into clusters by HCT component, no two studies were the same with regards to intervention activities. It was also difficult to figure out why a study with the same general configuration of components led to positive results, while others reported mixed results. One possible explanation could be intervention fidelity and/or reach into the study population. However, the “why” remained elusive, despite a deep dive into the intervention types.
• Of the 26 studies included in this evidence review:
  • a. The rating of scientifically rigorous was not given to any studies.
  • b. The rating of moderate evidence was given to 5 studies (19%).
  • c. The rating of emerging evidence was given to 14 studies (54%).
  • d. The rating of mixed evidence was given to 7 studies (27%).
  • e. The rating of evidence against was not given to any studies.
• Overall, the evidence base for structured HCT interventions is accumulating.
  • a. There was primarily emerging evidence regarding interventions to improve pediatric-to-adult HCT.
  • b. The highest level of evidence (moderate evidence) was found for individual studies across different component configurations.
  • i. Multicomponent A + B + C (planning for transition + transfer assistance + integration into adult care) (n=2)
    • ii. Multicomponent A + B + D (planning for transition + transfer assistance + care coordination) (n=2)
    • iii. Multicomponent A + B + C + D (planning for transition + transfer assistance + integration into adult care + care coordination) (n=1)
  • c. The multicomponent A + B + D (planning for transition + transfer assistance + care coordination) intervention category (n=4) yielded the highest intervention type evidence rating (moderate/ emerging evidence).
  • d. Title V programs interested in improving HCT are encouraged to review these effective studies.

IMPLICATIONS

• Over the last decades, researchers have demonstrated the importance of planning for the transition to adulthood, especially for youth with disabilities and SHCN. The studies included in this review demonstrate that multicomponent interventions are more prominent and show value in improving transitions to adult health care. The studies also demonstrate that a structured HCT process results in positive outcomes in the triple aim domains of population health, patient experience of care, and utilization.
• Youth without special health care needs. Research demonstrates that it is important to prepare all adolescents for successful HCT. Without proper preparation, youth may be at risk for limited health literacy, overuse of emergency department services, high medical costs, and increased morbidity and mortality (Leung et al., 2019). Health care providers who care for youth should look at ways to incorporate transition as part of routine health care visits, including planning for time alone to prepare youth to manage their own health care (Lebrun-Harris et al., 2018). By listening to youth and focusing on their needs as they approach adulthood, providers can promote health care independence, identify barriers that prevent youth from taking ownership of their care, and set them up for success as adults (Schuiteman et al., 2020). Additional research is needed to overcome transition obstacles and to tailor interventions to help healthy and noncomplex youth during this vulnerable time of their lives.
• Future directions. With the vast majority of U.S. youth not receiving transition preparation, shared accountability, effective communication, and care coordination are needed between pediatric and adult clinicians and systems of care (White et al., 2018). A multicomponent, structured HCT process can avoid a meandering path to adult health care or an abrupt transfer to a new system of care that could leave millions of adolescents floundering and without access to needed health services each year. A future investment is needed by public and private funders and systems of care to support more developmental evaluation studies and other more rigorous designs to assess the outcomes of structured transition planning, transfer, and integration interventions provided to a broader population of youth with and without chronic conditions (Schmidt et al., 2020).

EVIDENCE ANALYSIS REPORTS

• Evidence Review: Brief. A summary of report methodologies, results, key findings, and implications.
• Evidence Review: Full Report. A critical analysis and synthesis of the effectiveness of strategies that might be applied to address this NPM to serve as the foundation for accountability across all states and jurisdictions. The evidence review uses a structured approach to evaluate the available empirical evidence and to draw conclusions for MCH programs based on the best available evidence. Read about the evidence analysis report methodology | You can also access the full set of Evidence Analysis Reports.

Watch a short video discussing state-of-the-art, evidence-based/informed strategies that can be used or adapted as ESMs. Experts in the field discuss approaches, the science, and specific ways that Title V agencies can implement and measure these approaches.

• MCH Needs Assessment Toolkit: MCHneeds.net
• Root-Cause Analysis (RCA): Fishbone Diagram Tool
• Results-Based Accountability (RBA) Summary
• Population Turn-the-Curve Strategy Tool
• Performance ESM Quadrant Measurement Tool

Many of the strategies with the strongest evidence supporting them are those that are more clinical or those based in enabling services rather than those that can be easily implemented by Title V agencies. As we look to “move down the MCH Pyramid” with less emphasis on direct services (disease management) to an increased focus on public health services and systems (primary and secondary prevention and population health management), we are often challenged in identifying evidence-based/informed practices to meet the new focus of the transformed MCH Block Grant.¹ 

Where possible, we try to align evidence-based strategies (“what works”) to activities that can be adopted by Title V agencies (“what we can do”). However, there is often the need for adaptation and innovation.² Sometimes it’s difficult to identify the role a Title V agency could take in implementing and/or adopting such evidence-based/informed strategies.

When deciding how best to implement a strategy that seems outside the typical role of Title V, it may be helpful to consider activities that support the strategy while aligning with activities that Title V is charged with,³ such as:

• Assessing ongoing community needs: Title V can use data collected by programs, evaluations, or more formal needs assessment findings to see if the strategy could address identified service gaps or build equity in access and positive health outcomes.
• Informing and educating the public: Title V can provide educational/outreach materials to families/consumers to advance the strategy through training and peer support.
• Engaging community partners and families: Title V can serve as the convener for those groups/organizations that can implement the strategy.
• Integrating systems of public health. Title V can help ensure access, sharing of resources, and coordination of services to assure maximum impact of the strategy (coordinating the public health approach, health care, and related community services).
• Educating the MCH workforce (building capacity): Title V can partner with groups actually conducting this strategy in order to train MCH and healthcare professionals in strategy implementation.
• Developing public health policies and plans: Title V can support adoption of the strategy at a state level.
• Ensuring quality improvement and promoting applied research: Title V can collect data and evaluate programs in the state/jurisdiction that are implementing this strategy to build the evidence base and promote rapid innovation.

Not all strategies are effective for all population groups, and the evidence is often lacking in terms of using specific strategies to advance health equity.

Once the evidence has been considered for what works generally,, it is important to understand if a specific strategy will work for targeted populations, especially those most affected by health disparities. Implementation science helps to translate the science into programs and policies that impact health outcomes in light of multiple social determinants. In finding strategies to meet needs, we have the ability to adopt and/or adapt what works.

ADOPT Strategies to Meet Needs

In choosing to adopt an existing strategy based on existing science and practice, we should consider:2

Is the study sample or population similar to our target audience?

• ​Geography
• Demographic characteristics
• Culture, values, and preference
• Health status
• Other characteristics of interest 

Do we have the resources needed to implement?

• ​Workforce capacity
• Money
• Time
• Leadership 

Does our organization and the broader environment support the strategy? ​

• Political support
• Financial and legal support
• Champions for intervention
• Community norms and partnerships
• Title V priority and jurisdiction
• Favorable environment for change​​

Adapt Strategies to Meet Needs

Not all strategies are effective for all populations. To adapt strategies to meet needs, we should consider:5

What about the existing strategy works? If we understand the key ingredients of a strategy, we can replicate and/or adapt the effective components. Looking at a strategy through a health behavior theory identifies key ingredients. Here are several to consider:

• Intrapersonal. Theory of Planned Behavior, Health Belief Model, Stages of Change Model.
• Interpersonal. Social Cognitive Theory, Social Norms Theory.
• Community. Diffusion of Innovation, Ecological Models.

How does it work? Being specific about the underlying mechanisms can help us increase the impact. Developing a logic model with program actions, targets, outcomes, and moderators allows you track the process from action to outcome.

For whom does it work, and for whom does it not work? When we know who is and is not responding, we can make targeted adaptations to improve outcomes. Think about the program life cycle:

• Precision. Understand what a strategy entails so you can go beyond “does it work,” to “what about it works” and “for whom does it work.”
• Fast-cycle iteration. Incorporate new ideas as you go – what is working and what is not working.
• Shared learning. Create a mechanism to share learning about success and failures.
• Co-creation. Bring together multiple parties to create a mutually valued outcome.

In what contexts does it work? By evaluating the context in which a strategy is implemented, we can adapt it for other settings. The best way to ensure that a strategy is effective is to conduct a robust evaluation. The MCH Navigator’s Evaluation Spotlight provides trainings and resources related to the steps and standards for effective program evaluation.

• Find field-based resources focused on health care transition relevant to Title V programs in the MCH Digital Library.
• Search the Established Evidence database for peer-reviewed research articles related to strategies for health care transition.
• Request Technical Assistance from the MCH Evidence Center
• MCH Evidence Center Frameworks and Toolkits:
  • MCH Evidence Framework
  • Blueprint for Change for CYSHCN Toolkit
  • Maternal Health Toolkit
  • Life Course and Social Determinants Resource Brief

• Got Transition/Center for Health Care Transition Improvement: An MCHB-funded technical assistance resource center, this project supports NPM 12 topic areas.
  • General Transition Resources:
    • Health Care Transition in State Title V Programs: A Review of 2021 Block Grant Applications/ 2019 Annual Reports and Recommendations
    • Updated Six Core Elements of Health Care Transition™ 3.0
    • Implementation Guides and additional information
    • Six Core Elements of Health Care Transition
    • Transitioning Youth to Adult Health Care Services
    • Transitioning to Adult Approach to Health Care Without Changing Providers
    • Integrating Young Adults in Adult Health Care 
    • Validated Transition Tools
    • Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home
  • State Transition Information:
    • Baseline Assessment of Health Care Transition Implementation in Title V Care Coordination Programs
    • Health Care Transition in State Title V Program: A Review of 2018 Block Grant Applications & Recommendations for 2020
    • State Title V Health Care Transition Performance Objectives and Strategies: Current Snapshots and Suggestions
• Implementation Toolkit for National Performance Measure 12 (AMCHP). This toolkit contains examples of state strategies being used to address NPM 12 in Title V programs.
• Preparing Youth with Intellectual and/or Developmental Disabilities When Transitioning to Adulthood on Medical Care Decision-Making (American Academy of Pediatrics). This policy statement offers essential guidance to help pediatricians support these young adults and their caregivers by emphasizing the importance of transition planning. Recommendations include forming support teams that bring together youth, caregivers, teachers, and pediatricians, starting conversations and planning between ages 12 and 14.