How Can the Transition From Pediatric to Adult Care in SCD Be Optimized?

Kristen Howell, PhD, MPH, of Texas A&M University, spoke of her study on the transition from pediatric to adult care in sickle cell disease (SCD), an interest she brought to bear in her work with Jane Hankins, MD, MS, at St. Jude Children’s Research Hospital.

“We’ve seen that as individuals with sickle cell age, their disease often gets worse,” Dr. Howell remarked. “They have more complications, they have even just increased mortality as they age.”

Attention to the transition period from pediatric to adult care is especially important for the rise in mortality curve observed in SCD at that age, Dr. Howell placing it at approximately 22 years.

The two clinicians have explored how a SCD transition program (such as that at St. Jude) should be conducted and evaluated. Dr. Howell said there exist general guidelines for chronic disease that transfer gaps should be six months or less, but that these lack evidence.

Through a study examining retrospective data from SCD patients at St. Jude, the clinicians wanted to see if they could find evidence for such guidelines as applied to SCD.

Regarding the rates of care in the patients’ adulthood, they found that patients with transfer gaps of longer than six months “had two times the rate of inpatient visits and a little under two times the rate of emergency department visits, but actually fewer clinical visits,” Dr. Howell said.

She continued, “what we’re seeing is the longer it takes them to get to the adult care facility…they have far worse health. They’re in the in the hospital more often, they’re in the emergency department more often. And conversely, they’re actually not in the clinic as often.”

These recent study findings are limited by being from a single center, but Dr. Howell is optimistic that a multicenter study can be conducted and produce findings beneficial to global SCD transition programs.