Study shows timely transition from pediatric to adult care is critical for young adults with sickle cell disease

Sickle cell disease is the most common inherited red blood cell disorder in the United States and can lead to health problems including organ dysfunction, acute chest syndrome and strokes over a patient’s lifespan. According to a new study, individuals living with sickle cell disease who experience a delay of more than six months after transferring from pediatric to adult care are twice as likely to be hospitalized compared to those who transition in less than two months.

In the study, Kristen Howell, PhD, assistant professor in the Department of Epidemiology and Biostatistics at the Texas A&M University School of Public Health, and colleagues used data on individuals with sickle cell disease who completed pediatric care at St. Jude Children’s Research Hospital in Memphis between 2012 and 2018. The clinic at St. Jude runs a transition preparation program that starts at age 12 in educating patients on the transition process and introduces them to adult health care facilities at the age of 17. Current guidelines state that individuals with chronic disease should transfer from pediatric care to adult care within six months; however, this had not been studied in a sickle cell population.

Howell and colleagues followed patients from their first adult care visit through the end of 2020 and excluded patients who did not have an adult care appointment after leaving pediatric care. The researchers measured the length of time between the last pediatric visit and first adult appointment and categorized that length as less than two months, two to six months and six months or greater. They also tracked routine outpatient visits, inpatient hospitalizations and emergency department use during the study period. Lastly, the analysis included data on factors like sickle cell disease genotype, patient sex and health insurance type at time of transfer.

The analysis found that around 88 percent of the study participants successfully transferred to adult care within the recommended six-month period, with a median transfer gap of about a month and a half. Howell noted that those who transitioned to adult care within the recommended period had more outpatient visits and less acute care use. In contrast, those who had transfer gaps longer than six months were two times more likely to need hospitalization.

“There are several barriers to transition including challenges in care coordination, insurance coverage, and institutional and practioner bias. Transition programs are designed to help address these barriers,” Howell said. “The goal of this study is to provide evidence to support the transition guidelines of a six-month transfer gap and improve the health of individuals with sickle cell disease as they enter adulthood.”

The researchers suggest that transition programs that include early introductions to adult care, promotion of patient self-efficacy and health literacy education help improve health outcomes.This confirms that a swift transfer—specifically, less than six months—from pediatric to adult care may reduce the use of acute care services in adult care.