Transition Clinic
Transitioning pediatric patients with sickle cell disease (SCD) to adult care is an empowering process. We aim to equip patients with SCD with the confidence, self-management abilities and resources they need to seamlessly transfer to an adult SCD clinic and primary care provider, enabling them to be active decision-makers in their health.
How Adult Sickle Cell Disease Care Differs from Pediatric Sickle Cell Disease Care
The transition from pediatric to adult sickle cell disease care involves a significant shift in treatment approach, care settings and provider expertise. While pediatric care focuses on managing and preventing acute complications and promoting growth and development, adult care focuses on chronic complication management and maintaining well-being with aging. This transition requires increased patient autonomy and self-advocacy.
Your Transition to Adult Sickle Cell Disease Care
Beginning the transition process early, around the age of 12 to 13, provides the opportunity for you to gradually get used to new protocols during appointments and ultimately transition to an adult doctor. Throughout your teenage years, your hematologist (SCD doctor) and pediatrician will facilitate this process by engaging you in conversations about your health. You will need to:
- Know your medical conditions and the medications you are taking
- Learn how to make your own appointments and order your medication refills
- Know your medical insurance information
- Know your medical history (such as blood test results, vaccinations, hospital visits, blood transfusions and similar information)
Getting Ready for Your New Sickle Cell Disease Providers
Appointments with the adult care team will be scheduled prior to your 21st birthday, allowing you to establish a connection with them before fully transitioning to adult care at age 21. By choosing an adult SCD doctor and adult primary care physician well before the age of 21, you’ll ensure a comfortable transition into adult care.
In order to be ready for your new SCD doctor and primary care provider, remember to:
- Ask your pediatric SCD doctor to provide a medical summary for you
- Keep a list of any medications you take
- Verify that your insurance is accepted by your adult providers
- Bring your insurance and immunization cards with you to the appointments
Helpful Tips for Entering Adulthood with Sickle Cell Disease
The transition process is a crucial step towards taking ownership of your health and fostering independence. While it may seem daunting, especially after forming close bonds with your pediatric providers, Montefiore Einstein’s pediatric and adult care teams will collaborate to provide comprehensive support, guiding you through this progressive phase with empathy and expertise.
For those of our patients who are heading into higher education, here are nine tips from the CDC to living well with SCD in college:
Gene Therapy Certified Treatment Center
We are one of the few gene therapy certified treatment centers for sickle cell disease in the country. Gene therapy is an FDA-approved treatment that has been shown to cure sickle cell disease by correcting or replacing the gene responsible for producing abnormal hemoglobin. For eligible patients affected by the condition, this innovative approach holds hope for providing a long-term cure and improving their quality of life.
