Promising Practice Summary: The National Alliance to Advance Adolescent Health/ Got Transition

Overview

The National Alliance to Advance Adolescent Health/ Got Transition focuses on achieving long-term systemic improvements in comprehensive health care for adolescents, with a specific emphasis on health care transitions. The organization aims to increase the adoption of evidence-informed health care transition approaches, particularly for adolescents with epilepsy, to enhance their health care experience and outcomes.

Project Background

The project addresses the significant gap in health care transition from pediatric to adult health care for youth and young adults with epilepsy, which includes planning, transfer, and integration into adult care. This transition period is often marked by increased morbidity and mortality. Non-adherence to treatments and lack of proper transition planning, transfer and integration are some of the issues that result in poor transition outcomes. Systematic reviews demonstrated the importance of structured health care transition processes to mitigate these issues, including youth with developmental or intellectual disabilities, which are often comorbid with epilepsy.

Data/Outcomes

The primary accomplishment of this promising practice is the development and implementation of a structured process for health care transition, known as the Six Core Elements of Health Care Transition. Systematic reviews have shown that such a structured approach improves patient and provider health experiences, adherence to care, as well as the utilization of care. The project successfully helped practices incorporate these elements, demonstrating improved outcomes for patients with epilepsy. Data from the project, including data from the Current Assessment of Healthcare Transition Activity measurement tool, indicated significant strides in transition planning and integration into adult health care settings.This project showed that incorporating a health care transition structured process for children and youth with epilepsy resulted in statistically significant health care transition practice improvements.

Recommendations

For organizations looking to replicate this practice, several key steps are recommended:

• Engage leadership and stakeholders, including youth with epilepsy and their families, in the planning process.
• Implement a structured process such as the Six Core Elements of Health Care Transition, ensuring that each element is tailored to the specific needs of patients with epilepsy.
• Utilize transition readiness assessments and incorporate the needed skills into a health care transition care plan.
• Develop practical tools and resources, such as guides for families and training materials for staff, to support the transition process.
• Once a practice change is implemented and proven to work, integrate it into job descriptions to ensure ongoing incorporation of the practice when staff turnover happens. 
  
  

Sustainability and Challenges

Sustainability is an important part of a transition process. Practical tools and approaches were developed to ensure that the transition process could be maintained over time. These included embedding transition-related tasks into job descriptions and conducting quality improvement projects to streamline processes. The main challenges included the logistical difficulties of practice change, the impact of external factors (such as the COVID-19 pandemic) and lack of infrastructure in adult systems/medical home related to transfer and integration. However, the project's success in creating sustainable practices in various settings demonstrated its effectiveness and potential for long-term impact.