Patients With SCD Who Experience Longer Delays Transitioning Between Care More Likely to Be Hospitalized


Patients with sickle cell disease with more than a 6-month delay transitioning from pediatric to adult care were about twice as likely to be hospitalized.

According to study results published in Blood Advances, patients with sickle cell disease (SCD) who experience a delay of more than 6 months when transitioning from pediatric to adult care are about twice as likely to be hospitalized compared to patients who transition in less than 2 months. For patients who have SCD, which is the most common inherited red blood cell disorder in the United States, current guidelines recommend that patients transfer from pediatric to adult care within 6 months.1

Sickle cell disease red blood cells -- Image credit: Ezume Images |

Image credit: Ezume Images |

“There are a lot of barriers to transition. Patients may not be comfortable with their new providers and not know where to go, but a lot of those challenges are addressable,” said Kristen Howell, MPH, PhD, assistant professor at Texas A&M University, in a news release. “These data show that if we can decrease that transfer gap, we’ll hopefully see improved health care and outcomes.”1

The investigators hypothesized that longer transfer gaps in between care may be associated with increased resource utilization. In this study, transfer gaps were defined as the time between the patients’ last pediatric visit and first adult visit. Using binomial regression, the investigators estimated the associations between varying transfer gaps and the rate of inpatient, emergency department (ED), and outpatient visits.2

For this study, a total of 356 young adult patients with SCD who were ending pediatric care were enrolled. All patients transferred from St Jude Children’s Research Hospital Memphis to an adult SCD program at a partner institute between 2010 and 2018. Of the total patients, approximately 48% (n = 173) were ineligible for inclusion because they transferred elsewhere (n = 80), lost to follow-up (n = 91), or passed away during their adolescence (n = 2).2

Among the patients who were eligible for the study and completed transfer, approximately 88% had transferred to adult health care within the recommended 6 months, with a median transfer gap of 1.4 months (IQR: 1.0, 2.2 months). These patients also attended more outpatient visits in pediatric and adult care, and there were no other significant differences between the 6-month transfer gap status. During the follow-up period (median: 5 years; IQR: 3.0, 7.0 years), female patients who met the recommended guideline were observed to have more frequent ED visits, and patients with public insurance had more frequent inpatient and ED visits compared to their uninsured counterparts. Additionally, patients with HbSS/HbSβ0 thalassemia, those who had ever used hydroxyurea, and those who had chronic transfusions had more frequent inpatient, ED, and outpatient visits.2

Further, patients who had transfer gaps of 6 months or longer were 1.89 times more likely (95% CI: 1.17, 3.04) to have had an inpatient hospital visit at 2 years of follow-up compared to those who transitioned in fewer than 2 months. This population also had fewer outpatient visits in adult care. Additionally, at 8-year follow-up, patients had 2.01 times (95% CI: 1.31, 3.11) the rate of inpatient visits compared to those with gaps of 2 months or less. The investigators also observed that transfer gap length was not significantly associated with ED encounters during the 8-year follow-up (IRR: 1.37, 95%CI: 0.80, 2.33); however, after restricting the first 2 years of adult care, patients with transfer gaps of 6 months or longer had 1.75 (95% CI: 1.10, 2.80) times the adjusted incidence rate of ED encounters compared to their counterparts. Further, transfer gaps between 2 and 6 months compared to less than 2 months were associated with fewer outpatient encounters in adult care (IRR: 0.71, 95%CI: 0.53, 0.96).2

The study authors acknowledge that a possible limitation to the study is the exclusion of all individuals who failed to transfer to adult care. Additionally, they note that low-income pediatric patients can be removed from Medicaid at 19 years of age, therefore, loss or change of insurance was not considered in the study’s findings. The enrolled population was also from 3 institutions (1 pediatric and 2 adult programs) that have strong transition programs that other institutions may lack, reducing the generalizability of the findings.2

The investigators aim to conduct future research that expands to additional institutions to assess similarities of the findings within different populations. Additionally, they urge that additional studies should evaluate the longer-term clinical effects as a result of duration of transfer gaps, and whether interventions can reduce the transfer gap within patients with SCD.1,2

“If these young adults are frequently visiting the hospital for acute reasons, it’s a pretty clear indicator that they are not doing well,” said Howell in the news release. “Having continuity of care can make a big difference, and that should be a goal for hospital systems.”1

1. American Society of Hematology. Gaps in transition from pediatric to adult care for individuals living with sickle cell disease associated with more hospital visits. News release. May 29, 2024. Accessed May 30, 2024.
2. Howell, K, Kayle, M, Smeltzer, MP, Nolan, VG, Mathias, JG, Nelson, MN, et al. Gaps during Pediatric to Adult Care Transfer Escalate Acute Resource Utilization in Sickle Cell Disease. Blood Adv 2024; bloodadvances.2023011268 doi:10.1182/bloodadvances.2023011268
Related Videos
Mid-section portrait of unrecognizable woman during last months of pregnancy holding her big belly gently standing against wall in blue room - Image credit: pressmaster |
palliative and hospice care/ Image Credits: © David Pereiras -
multiple myeloma clinical trial daratumumab/ Image Credits: © Dragana Gordic -
multiple myeloma clinical trial/Image Credits: © Studio Romantic -
Medicine tablets on counting tray with counting spatula at pharmacy | Image Credit: sutlafk -
pharmacy oncology, Image Credit: © Konstantin Yuganov -
Mayo Clinic oncology pharmacy
Testicular cancer and prostate cancer concept. | Image Credit: kenchiro168 -
Medicine tablets on counting tray with counting spatula at pharmacy | Image Credit: sutlafk -
© 2024 MJH Life Sciences

All rights reserved.