Supporting the transition of care for adolescents with hemophilia.

As one of its national priorities, the NHPCC is working to improve the transition from pediatric to adult care. As a child with a bleeding disorder progresses through normal developmental stages, learning to care for oneself and cope with this chronic disease can be challenging and requires specific interventions. Although guidelines to support transition of children with hemophilia to adulthood have been developed, implementation of them in the clinical setting has been difficult.

The NHPCC, in collaboration with the regional networks, identified adolescent transition as the first national priority for quality improvement. It is a Healthy People 2020 (HP2020) measure, and both the patient and HTC needs assessments identified transition as a gap in care. Transition of care is also recognized as an area for continued improvement across all healthcare systems, and consequently is one of the nation's HP2020 goals.

ATHN's Transition Work Group identified the Got Transition six core elements as the national framework for improving transition services at the HTC level.

The six core elements are:

  1. Transition Policy
  2. Transition Tracking and Monitoring
  3. Transition Readiness
  4. Transition Planning
  5. Transfer of Care
  6. Transfer Completion

To assist HTCs in implementing the six core elements in their practice, the Transition Work Group teamed with the Partners PRN to develop a video that demonstrates how to the navigate the Got Transition website and find tools that can be modified to meet the needs of the bleeding disorder community.

In addition, the NHPCC is funding TRANSITâ„¢, a website to support transitioning of adolescents with hemophilia to adult care. Focusing on kids aged 9 to 12, TRANSIT provides interactive content in the areas of social support, lifestyle, self-advocacy, self-esteem, sexual health, and independent healthcare behavior. Use of the website is reviewed by HTC staff with the patient. This project is one of the four projects of national significance funded by the NHPCC. Project lead: Christine Kempton, MD, MSc