Methodist-St.Jude Partnership Aids Pediatric Patients’ Transition to Adult Sickle Cell Care

St. Jude Children's Research Hospital and Methodist University Hospital are working together to ensure patients with sickle cell disease transition smoothly from pediatric care to adult treatment.

Sickle Cell Disease is a group of inherited red blood cell disorders that cause red blood cells to become hard and sticky, in the shape of a sickle. The cells die early, which causes a shortage of red blood cells.

And when the sickle-shaped cells travel through small blood vessels, they become stuck and clog blood flow, which can cause pain and problems like infection, acute chest syndrome and even stroke.

Pediatric patients born with the disease face an increased risk of infection and other health problems, making early diagnosis and treatment critical.

Symptoms and complications differ from one patient to the next, as do treatment options, so it's crucial for patients and their families to understand their illness and individualized treatment plan.

"When your child has sickle cell disease, it takes a multidisciplinary team to help your family understand and accept the diagnosis, and be prepared to anticipate problems and deliver the care to your children outside the walls of the hospital," said Dr. Jane Hankins, a pediatric hematologist at St. Jude. "With any chronic disease, the family are partners in care. So, we begin by educating the family about sickle cell disease."

This education includes anticipating complications, preventing infection and understanding the use of oral and intravenous drugs.

Because there are many differences between pediatric and adult healthcare, St. Jude's pediatric sickle cell patients, starting at age 12, begin preparing for the transition to adult care through education, planning and transition skill-building.

Teen patients are trained in important skills to help them navigate the healthcare system, including making appointments with clinicians, reading their insurance cards and filling prescriptions.

As patients near age 18, a transition case manager will invite them and their families to tour the Methodist Comprehensive Sickle Cell Center in Midtown.

"Before they transition, we have several opportunities for patients and their families to learn more about the sickle cell center at Methodist," said Dr. Marquita Nelson, hematologist and director of the Methodist Comprehensive Sickle Cell Center. "We have transition tours where they meet the practitioners, social workers and all the ancillary staff and learn more about the clinic before they transition."

The transition case manager will then schedule appointments and transfer medical records.