High Emergency Department Use for Sickle Cell Disease Recharacterized in New Study

A recent retrospective cohort study seeking to redefine high emergency department (ED) utilization as a result of sickle cell disease (SCD) described 4 new categories of ED utilization that may allow for the reframing of how ED use is determined.1

SCD affects roughly 100,000 individuals in the US alone. Associated with a severely shortened lifespan, prior studies have indicated that patients with SCD have a median death age of 43 years. The most common complication of SCD is severe painful events, known as vaso-occlusive episodes (VOEs). Increases in VOE frequency per year has also been associated with increased risk of mortality.2

Between 1999 and 2020, there were roughly 4.9 million ED visits for SCD in the US – 75% of these were for treatment of VOEs. Roughly 222,612 occurred annually during this timeframe, noted as a nearly 13% increase from previous estimates. Additionally, over half of surveyed patients reported utilizing the ED for severe levels of pain consistent with VOEs.3

“Understanding actual utilization based on data for individuals with SCD is important as it will allow for early identification of potential changes in utilization for an individual patient,” wrote Paula Tanabe, PhD, Duke University School of Medicine, and colleagues. “Clinicians can then begin to investigate reasons for utilization changes with the patient earlier.”1

Tanabe and colleagues utilized the statewide, all-payer North Carolina Hospital Discharge Data, collecting data from 2012-2020. Participants were included if they had SCD defined as 3 or more visits – ED, inpatient, or outpatient surgery. A collective 9964 patients with SCD were initially included – however, 269 patients died in a healthcare facility during the study period. Mean (standard deviation [SD]) age was 24.49 (17.54) years. The total included 9355 Black patients (93.89%).1

The main outcome of the study was annual ED visits between 2013 and 2019; these were defined as any ED visit, including treat-and-release ED discharges and admissions to the hospital. Demographic variables, such as age, sex, race, and ethnicity, were extracted from visit-level data. The 2020 state-ranked Social Vulnerability Index (SVI) was utilized to measure socioeconomic factors linked with ED visits at the county level. The SVI ranks counties on 16 social factors under 4 themes; socioeconomic status, household characteristics, racial and ethnic minority status, and housing type and transportation.1

In total, included patients had 100,188 ED visits from 2013-2019. These were categorized into 4 levels: low (0-1 visits/year), moderate (2-9 visits/year), high (10-32 visits/year), and super high (≥33 visits/year), with 3397 participants (34.09%) in low, 5631 participants (56.51%) in moderate, 758 participants (7.61%) in high, and 178 participants (1.79%) in super high. The team notes that <10% of participants contributed to 55% of all ED visits: more specifically, 178 participants contributed 27,358 ED visits (27.3%) and 758 contributed 28,124 (28.1%). Nearly 1 in 3 ED visits (31,406 [31.35%]) resulted in hospitalizations, with a mean (SD) stay of 5.1 (4.6) days.1

Age was also significantly associated with ED visit grouping. Compared to younger age groups (e.g. age <19 years), older groups were more likely to have moderate (age 19-39 years: odds ratio [OR] 2.07; 95% CI, 1.88-2.29; age ≥40 years: OR 1.22; 95% CI, 1.09-1.37) or high (age 19-39 years: OR 6.09; 95% CI, 4.98-7.46; age ≥40 years; OR 1.57; 95% CI, 1.2-2.05) ED utilization versus low ED utilization. However, the young adult group was 16 times more likely to have super high ED utilization (OR 16.44; 95% CI, 9.75-27.72) versus low.1

Despite the clear-cut appearance of the results, Tanabe and colleagues note a few limitations with the study. First, investigators were unable to examine previously identified risk factors for high ED utilization, such as clinical characteristics representative of medical (acute chest syndrome, transfusions) and psychiatric (anxiety, depression) morbidity or chronic opioid therapy use. Second, dataset limitations resulted in a lack of specificity to determine disease severity or complications.1

“As these visits approach the high and super high categories, ED clinicians should be brought into the conversation, and specific plans should be available in the electronic health record to guide ED management,” Tanabe and colleagues wrote. “Often, these patients will have complex medical, social, and behavioral health needs.”1

References

1. Tanabe P, Pan W, Blewer AL, et al. Redefining High Emergency Department Utilization for Sickle Cell Disease. JAMA Netw Open. 2025;8(6):e2513361. doi:10.1001/jamanetworkopen.2025.13361

2. Hassell KL. Population estimates of sickle cell disease in the U.S. American Journal of Preventive Medicine. 2010;38(4). doi:10.1016/j.amepre.2009.12.022

3. Attell BK, Barrett PM, Pace BS, et al. Characteristics of emergency department visits made by individuals with sickle cell disease in the U.S., 1999–2020. AJPM Focus. 2023;3(1):100158. doi:10.1016/j.focus.2023.100158