Delays in switch to adult sickle cell care tied to more hospitalizations

Waiting 6 months raised likelihood of hospital stay in first 2 years of adult care

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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Longer gaps in transitioning from pediatric to adult care were associated with more hospital stays for people with sickle cell disease (SCD), a study indicates.

Young adults who had a delay of more than six months were twice as likely to be hospitalized over those who made the switch in under two months.

“There are a lot of barriers to transitioning,” Kristen Howell, PhD, assistant professor at Texas A&M University and the study’s first author, said in a press release. “These data show that if we can decrease that transfer gap, we’ll hopefully see improved health care and outcomes.”

The study, “Gaps during Pediatric to Adult Care Transfer Escalate Acute Resource Utilization in Sickle Cell Disease,” was published in Blood Advances.

Young adulthood is a vulnerable time for SCD patients and is accompanied by an elevated risk of worsening disease severity, hospitalizations, complications, and mortality. This corresponds with the period when a patient might transfer from pediatric healthcare to an adult care setting.

It’s critical for patients with chronic diseases like SCD to have continuous and uninterrupted access to medical care, and guidelines indicate people with such conditions should transition to adult care within six months of leaving a pediatric practice.

But making the switch is not as simple as making a doctor’s appointment. It requires a careful process, coordinated between the patient, healthcare providers, and other members of the healthcare system.

Patients may face barriers during this process that slow down or delay the transition, which contributes to worse health outcomes. If a patient has left pediatric care, but hasn’t established themselves at an adult SCD center, they may become increasingly reliant on emergency departments or hospitals when health issues arise.

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Longer delays lead to worse SCD health outcomes

Here, researchers reviewed data from 183 young adults with SCD who ended pediatric care at St. Jude’s Children’s Research Hospital in Memphis between 2012 and 2018, and initiated care at a partner adult SCD program to learn more about the link between care transition gaps and health outcomes in SCD.

Most (88%) made the switch within the recommended six months, with a median transfer time of 1.4 months. These patients had more outpatient pediatric and adult care visits than those who waited longer before transferring.

Young adults who waited six months or longer to move to adult care were 1.89 times more likely to have had an inpatient hospital stay during the first two years of adult care than those who waited less than two months. Those who waited longer to be transferred were also 1.75 times more likely to have an emergency room visit in the first two years of adult care than those who transitioned sooner.

Over the entire eight-year follow-up, those who waited six months or longer to complete the transition to adult care were more than two times more likely to require hospitalization, but the risk of visiting an emergency department wasn’t elevated.

“If these young adults are frequently visiting the hospital for acute reasons, it’s a pretty clear indicator that they are not doing well,” Howell said. “Having continuity of care can make a big difference and that should be a goal for hospital systems.”

Researchers said their findings are similar to other chronic disease settings, where young adults with a longer care gap have worse health outcomes.

Closing these gaps will mean addressing barriers that patients face during the transition. While the reasons why patients might delay switching weren’t evaluated, they may include gaps in insurance coverage, being uncomfortable about a less familiar environment or doctor, and a lack of understanding about the disease and its treatment.

“Interventions to prevent gaps in healthcare between pediatric and adult care should be developed and implemented in transition programs,” the researchers wrote.

At St. Jude’s, a transition program has been implemented that starts when patients are as young as 12, so that by the time they reach adulthood, they’re prepared to switch. The researchers hope to study SCD populations at different hospitals to see if their findings are generalizable to a larger group and whether aspects of St. Jude’s program might be beneficial elsewhere.