Teen Transition

Almost all children with sickle cell disease are living longer into adulthood. For this reason, AYA with SCD must learn to become independent and take care of their own health, and their parents and caregivers must learn how to support their AYA in learning about their disease and overall health and navigating adult-based health. Healthcare transition refers to the process of preparing and supporting teens and young adults, especially those with special health care needs, as they move from pediatric to adult health care. It involves transferring responsibility for managing their health to the young person, while also ensuring a smooth transition to adult-centered care, new clinicians, and a different healthcare system. For people living with sickle cell disease, the period of transition is especially important in order to stay healthy. Many comprehensive pediatric-focused sickle cell centers have transition-based programming that helps AYA with SCD learn how to successfully manage their own health care.

How Transition Works: 

Many pediatric sickle cell centers or practices begin the transition process at age 13, and the official transfer of care to adult services tends to occur between ages 18 to 21. For many AYA who get medical care at pediatric sickle cell centers, they receive age-based SCD education and support from medical providers, nursing, social workers, school teachers, and/or psychology to help them prepare for the official transfer into adult medical care and adulthood. Things that may be covered during the transition period include (a) SCD education, (b) good healthcare practices (e.g., importance of yearly dental exams, importance of not using drugs, etc.), (c) independent self-care practices, (d) how to navigate adult healthcare systems, and (e) how to advocate for supports in school or job settings.