St. Jude-Methodist-Regional One Sickle Cell Disease Transition Clinic

St. Jude offers state-of-the-art care and treatment to children and teens with sickle cell disease. Once these patients turn 18, it is time for them to see doctors who treat adults. Teens with this disorder need to learn how to make their own treatment decisions. They must learn how to get the adult care they need.

Through the St. Jude-Methodist-Regional One Sickle Cell Disease Transition Clinic, St. Jude sickle cell patients learn to manage their own medical care. This Memphis clinic is a partnership with the Center for Sickle Cell Disease at University of Tennessee Health Science Center (UTHSC) and its affiliates at the Diggs-Kraus Sickle Cell Center at Regional One Health and the Methodist Comprehensive Sickle Cell Center.

With this combined effort, our patients’ medical team moves with them during this transition period.

As they become adults, many patients with sickle cell disease quickly become overwhelmed with treatment options and the fact that the disease affects many parts of the body. There are also increased social demands such as school, career, and home care responsibilities. Some patients may not understand the decisions they need to make. This can cause some to avoid care.

A smooth transition to adult care can help patients avoid these issues and live long, healthy lives.

In 2014, St. Jude began the Sickle Cell Clinical Research and Intervention Program (SCCRIP). SCCRIP is a clinical trial that follows the health of young adults as they enter and continue their adult care. We use findings from this clinical trial to:

• Better understand the disease’s long-term effects
• Develop better therapies
• Prevent disease complications such as:
  • Strokes
  • Kidney disease
  • Heart disease
  • Long-term pulmonary issues
  • Vision loss
  • Leg ulcers
  • Acute and chronic pain
  • Avascular necrosis

Through programs like the transition clinic, we can help guide care for these patients and improve their long-term health.

Several steps help move St. Jude sickle cell patients to adult care:

• Starting at age 12, patients prepare to move to adult care. They receive education, transition skill-building, and planning.
• When the transfer to adult care is near, a transition case manager invites the patient and family on a tour of the adult sickle cell treatment centers in Memphis. This gives the patient and family a sense of what adult care will look like.
• The patient chooses an adult care center and a hematologist (a blood disorders doctor). Then the transition case manager helps set up appointments and transfer medical records.

During the first visits

During the first few adult care visits, the patient will see both a pediatric hematologist and an adult hematologist. Members of the St. Jude team take part in the patient’s adult care. This helps patients feel more comfortable during the transition.

Throughout the process, health care providers at both hospitals educate patients about the disease, possible health issues, and treatment options. Patients learn to be responsible for their own health. In time, they move toward more independent care.