Key Findings
- Purpose
To describe age-related patterns of emergency department (ED) utilization among adolescents and young adults (AYAs) with sickle cell disease (SCD) in North Carolina and examine associations with sociodemographic characteristics and geographic access.
- Population (Model)
This retrospective observational study used North Carolina Hospital Discharge Data from 2014–2019. The cohort included 3,614 AYAs aged 14–30 years who had at least three SCD-coded inpatient, ambulatory surgery, or ED visits within a rolling five-year period. Participants were 54.2% female and 95.6% Black. The analysis included 39,585 ED visits. Latent growth class analysis was used to identify utilization trajectories.
- Headline Result
The analysis identified three ED-use trajectories. The low-use group comprised 3,440 participants (95.2%), with a mean of 2.29 annual ED visits (SD 2.55). The medium-use group included 147 participants (4.1%), with a mean of 20.38 annual visits (SD 7.42). The high-use group included 27 participants (0.7%), with a mean of 47.71 annual visits (SD 18.58). Utilization patterns were similar at age 14 but diverged after age 18. The cohort’s annual mean ED visits increased from 1.23 at age 14 to 5.35 at age 24, then declined to 4.64 by age 30.
Race was the only sociodemographic factor significantly associated with trajectory class (P = .030). The authors noted that the non-Black subgroup was small (n = 159). Sex, county-level Social Vulnerability Index (SVI), and distance to the nearest ED or comprehensive SCD center were not significantly associated with trajectory class.
- Why It Matters
The higher-use groups also visited more distinct ED facilities annually, an observational pattern that may warrant further evaluation of care continuity and coordination. The findings identify differences in utilization patterns but do not establish why those differences occurred or demonstrate that a particular intervention would reduce ED use.
- Evidence Gaps & Limitations
The study used data from 2014–2019 and therefore does not capture changes in utilization during or after the COVID-19 pandemic. Its focus on acute-care utilization may not represent care received outside the included settings or state.
The analysis could not assess potentially relevant factors such as genotype, disease-modifying therapies, chronic opioid use, formal transition-program participation, or individual circumstances.
The observational design does not establish causality, and deaths occurring outside healthcare facilities could not be assessed.
Source: Journal of Sickle Cell Disease- “Trajectories of emergency department use among adolescents and young adults with sickle cell disease in North Carolina”
Regulatory & Guideline Watch
This observational study does not establish a new clinical recommendation, mandate a change in ED protocols, or test a specific transition-care intervention. Its findings may prompt clinical teams to examine how follow-up into young adulthood, coordination between pediatric and adult services, and repeated ED use across facilities are considered in existing care processes.
These are practice considerations for further evaluation, not new guideline requirements.