Transition Resources for Your Family

Published on

Beyond Blood

What is transition? Transition is the process of adolescent patients learning about their bleeding or clotting disorder, taking responsibility for their healthcare and, finally, transferring their care to an adult provider.

HTC staff are here for patients and families as they move through this process. Providers will begin to discuss transition with patients as young as 12 years old.

To gauge a patient’s readiness for transition and identify gaps that may need to be addressed with further education, we use the Mid-Atlantic Region III Survey. There are two versions of the survey: one for 12- to 15-year-olds and one for 16- to 18-year-olds. These surveys were recently updated by the region’s Executive Committee. Each patient in these age ranges will receive a survey to complete as a part of his or her comprehensive care visit.

CHOP has a wealth of resources for families with children going through the transition process. CHOP's Transition to Adulthood Program website has a Resources section that includes age-specific tip sheets for parents or guardians and for children and youth, videos and information about in-person workshops that are hosted for families and teens. Through the REACH Program, CHOP offers two programs for patients: one for those who will attend college (REACH for College) after completing high school and another for those who will go to work (REACH for Independence). REACH is an acronym that stands for Rapport, Empowerment, Advocacy, through Connections and Health.

The website also includes some important tips for patients and families regarding transition:

  • Transition is a process, not an event.
  • The transition process should begin the day of diagnosis.
  • The adolescent and family members should be involved in all decisions.
  • Providers and parents should prepare to facilitate change.
  • Coordination of services and providers is essential.
  • There is no specific age when transition must be completed.
  • Avoid transitioning during a medical crisis.

Contributed by: Danielle Deery, JD, MURP