A landmark study has proposed new definitions for emergency department (ED) usage among people living with sickle cell disease (SCD), aiming to improve understanding and care strategies for this complex condition.
The cohort study analysed ED data from 9964 individuals with SCD across North Carolina over a seven-year period (2013–2019), totalling more than 100,000 visits. Researchers identified four distinct levels of ED utilisation: low (0–1 visits per year), moderate (2–9 visits), high (10–32 visits), and super high (33 or more visits).
Most patients (56.5%) fell into the moderate category, while just 1.79% were classified as super high users. Despite their small number, this group accounted for a disproportionate share of ED visits and was more likely to experience worse health outcomes, including earlier death. Patients in the high and super-high groups were typically older, more socially vulnerable, and more likely to visit multiple EDs.
The study also found that those with greater ED use tended to live in areas with higher social disadvantage and poorer access to specialist care. The average age at death in the super-high group was just 33 years, compared to 50 years in the moderate group.
Researchers suggest that these newly defined categories offer a more accurate framework for identifying patients at highest risk and tailoring interventions. The findings highlight the urgent need for improved access to coordinated, comprehensive care and underscore the impact of social determinants on health outcomes for individuals with SCD.
Reference
Tanabe P et al. Redefining high emergency department utilization for sickle cell disease. JAMA Netw Open. 2025;8;(6):e2513361.
