Key Steps:
Evaluate the adolescent’s understanding of their condition, treatment regimens, and emergency protocols.
- ACTION: Provide tailored education on managing SCD independently, recognizing symptoms of a sickle cell crisis, and understanding medication schedules.
Example: Sarah, a 17-year-old with SCD, works with her pediatric nurse to practice explaining her condition and treatment to a friend. This ensures she understands how to advocate for herself in medical situations.
- ACTION: Work with the pediatric care team to identify a hematologist or primary care physician with experience in adult sickle cell disease care.
- TIMELINE: Begin the search 6-12 months before the transition.
Example: Sarah’s pediatric hematologist refers her to Dr. Lee, an adult hematologist with experience managing SCD. They schedule an introductory meeting for Sarah to ask questions about care.
- ACTION: Ensure all medical records are up to date and shared with the new adult care provider.
Example: Sarah’s care team compiles her medical history, including her hydroxyurea prescription and recent lab results, to send electronically to Dr. Lee’s office.
- ACTION: Teach the adolescent how to order, refill, and track their medications, including understanding insurance processes for prescription coverage.
Example: Sarah sets reminders on her phone to take her medications and learns how to refill prescriptions through her pharmacy’s app.
