Many age-related health issues arise as patients with thalassemia transition from childhood into adulthood, including delayed puberty, fertility complications and early-onset osteoporosis. Transitioning is crucial to maintaining continuity of care and providing patients with best possible outcomes as adults. Our well-planned process for transition to the adult service is implemented over 12 to 24 months, depending upon the readiness of the patient. This process gradually encourages more independent patient treatments and self-sufficient care.
The New York Comprehensive Thalassemia Center (NYCTC) Transitioning Team consists of a pediatric hematologist, adult hematologist, social worker and nurse practitioner. The team works with transitioning patients to increase their knowledge about their disease, discuss the importance of keeping appointments and calling the thalassemia center about any problems, encourage compliance and self-administration of medications and/or treatments with less parental involvement, and eventually transfer decision-making from parents to patients.
Expectations Of The Transitioning Patient
- The patient will be responsible for communicating their medical history and answering questions regarding their health to adult providers, and be prepared to make decisions regarding their care.
- The patient will be responsible for communicating directly with the thalassemia program regarding scheduling and/or rescheduling of routine transfusion visits.
- The patient will be responsible for communicating directly with thalassemia program staff when ordering chelation medications and other refill requests.
- The patient will be expected to communicate directly with thalassemia center staff in the event of a medical emergency.
At the NYCTC, pediatric and adult infusion centers and physicians’ offices are all located in the same building. This makes it easy for transitioning patients to meet with an adult provider, tour the adult facility and meet staff at the adult physician’s office. This proximity also allows pediatric and adult providers to have joint discussions, assuring patients and families that everyone is in agreement on a future plan of care.