Youth with special health care needs face many barriers when transitioning to adult care. Most (60%) do not get needed transition services. Barriers include self-management deficits, insurance issues, lack of experienced specialists and poor care coordination.
Goal 1: Transitioning youth will achieve optimal health outcomes. Objective 1: A transition physician champion will improve communication and coordination between adult and pediatric health care teams. Objective 2: Youth will learn self-management of their diseases through health technology Objective 3: Provision of transition services will be optimized by electronic health record customization.
1. A transition champion will convene meetings with adult and pediatric specialists to improve communication, develop protocols and tools, and provide training to facilitate a smoother transition to adult care. One specialty will be targeted each year. 2. The health care team will better engage youth through a pilot transition education/intervention using health technology platforms such as social media, texting, and online education. One platform will be piloted each year. 3. The Epic electronic health record will be customized to improve adherence to transition protocols/documentation, engagement with the patient portal, and data collection and analysis. One customization will be completed each year. 4. Ongoing quality improvement will occur and program management will include expanding patient/family/community involvement, sustainability, and cultural competency.
The local AAP chapter, county and local public health and health care services departments, the local Catch Facilitators, and other community agencies (mental health, education, developmental disabilities) will have representatives serving on the program's advisory board to advise the program.
Evaluation measures will include the number of participants, meetings, and the protocols developed at physician networking events; EHR optimization results including data on adherence to documentation and patient/staff satisfaction; and the technology developed for transition education, including post-tests and utilization and patient satisfaction.
The Miller Children's & Women's Hospital Transition of Care Program continued to serve youth with chronic illness to prepare them for adulthood and the adult health care system. The program continued to expand, adding a new clinic to the pilot program, serving patients with blood disorders and cancer. A physician advisor was hired to help build relationships between pediatric and adult specialists. The program also began work on customizing the electronic health record to improve the program by creating a patient registry and updating the documentation tool for staff and physicians. A consultant was hired to develop the health technology plan for providing education to youth through texting, a website, and social media. In addition, patient and parent advisors were recruited for the program's Advisory Board. Outreach to community partners continued, with a focus on the ongoing redesign efforts for the state's Title V program for children with special health care needs.