Continuity of Sickle Cell Care Could Promote Long-Term Retention in Adult Care


A co-located model of care may be highly beneficial in easing the transition from pediatric to adult care.

sickle cell

Kristen Howell, MPH

Co-location of pediatric and adult sickle cell care providers has potential to increase long-term retention in adult care, suggest investigators from St. Jude’s Children’s Hospital.

For patients living with sickle cell disease, the transition from pediatric to adult care is crucial—especially since interrupted hydroxyurea and transfusion therapy can worsen disease course. 

Recommendations from the American Academy of Pediatrics published in 1996 encourage that patients be co-managed by pediatric and adult providers for up to 2 years.

“In light of this recommendation, our institution designed a transition program for individuals with SCD that starts at age 12 years, transfers to adult care at age 18 years, and uses a co-located care delivery model for adult care integration between ages 18 and 25 years,” wrote the investigative team, led by Kristen Howell, MPH, of the hospital’s Department of Hematology.

“In prior work, we showed that individuals who participated in this co-located model of care did not experience the expected increased acute health care utilization after transfer to adult care,” they continued.

As such, they assessed the impact of a co-located model of transfer on rate of retention compared to a pediatric care-only model.

A Transitional Model of Care

Between January 2007 – December 2017, 469 participants were eligible to transfer to adult care. Of this total, 78% (n = 364) completed a transfer.

All patients were treated through the St. Jude Transition to Adulthood Program but were given the option of receiving co-located care at a partner adult care facility or receive care at a separate facility. A majority (58%) of participants thus chose the co-located care model.

In this model, pediatric providers—consisting of physicians, neuropsychologists, and nurse educators—shared space and resources with adult providers—which included physicians, social workers, and advance practice practitioners.

Howell’s team defined adult care retention as attending the adult sickle cell disease facility at least once 12-24 months following the first visit.


At 12 months, the co-located care model demonstrated a retention rate of 80%—compared to 64% in the non-co-located model.

“Youth who participated in the co-location model were 1.87 (95% CI, 1.01-3.47) times more likely to remain in adult care 12 months post pediatric care compared to those in the non-co-location model after adjusting for year of transfer,” the team wrote.

They further reported that 24-month retention rates in the co-located and non-co-located model were 75% and 58%, respectively, with those in the former cohort 1.94 (95% CI, 1.01-3.70) times more likely to remain in adult care compared to those in the latter.

According to 12-month analysis, patients with more severe genotypes—HbSS/HbSSβ0-thalassemia—were 1.86 (95% CI, 1.12-3.09) more likely to be retained in adult care versus those with less severe genotypes.

Concluding Thoughts

“The co-located model of transition bridges the gap between pediatric and adult care by creating a partnership between pediatric and adult providers during the transitional period, and the present study demonstrated that it promotes greater retention 12 and 24 months after initiating adult care compared to those who only received pediatric transition services,” Howell and team wrote.

They noted that these findings were comparable to observations in other areas of healthcare, notably in similar transitional models for diabetes care. 

As such, this study only underscores the importance of patient continuity of care, especially for high risk populations.

“Not only does retention in adult care allow for opportunities to receive regular care, but it also allows access to newly developed treatments, including curative therapies for SCD, if care is received at specialized centers,” the investigators stressed.

The study, “Transition care continuity promotes long-term retention in adult care among young adults with sickle cell disease,” was published online in Pediatric Blood & Cancer.

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