New York study finds regional gaps in sickle cell disease hospitalizations
NYC had most admissions; Long Island had highest charges
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Sickle cell disease (SCD) hospitalization patterns vary across New York State, with New York City showing the largest share of hospitalizations and Long Island reporting the highest charges for care, a recent study showed.
In addition, longer hospital stays were seen in regions where access to specialized care may be more limited, data showed.
“Geographic differences in hospitalizations and outcomes for sickle cell disease point to the need for region-specific strategies,” Emmanuel Peprah, PhD, the study’s senior author and an associate professor of global and environmental health at New York University (NYU) School of Global Public Health, said in a university news story.
“Knowing that certain regions of New York have increased severity or longer lengths of stay could contribute to the need for improved surveillance, especially at the patient level,” said Emeka Iloegbu, the study’s first author and a public health scientist who recently earned his Doctor of Public Health degree at NYU.
The study, “Geographic and Temporal Differences in Sickle Cell Disease Hospitalizations in New York State,” was published in JAMA Network Open.
Access to specialized SCD care varies
SCD is the most common inherited blood disorder in the U.S., affecting an estimated 100,000 people. Although it’s most common among people of African descent, it also affects individuals of Hispanic, Middle Eastern, South Asian, and Southern European backgrounds.
About 10% of all Americans with SCD live in New York State, most often in New York City. Within New York State, SCD disproportionately affects Black and Hispanic populations and is concentrated in certain regions, placing a burden on the healthcare system.
Research has demonstrated persistent racial and socioeconomic disparities in SCD care, which can lead to poorer disease management and clinical outcomes.
“A range of factors can influence care for sickle cell disease — whether people are experiencing multiple health conditions at once, whether hospitals have a dedicated sickle cell disease team with [blood disease specialists] with specialized training, or have protocols in the emergency department for people who present in crisis,” Iloegbu said.
Prior research has shown that hospitalizations fall disproportionately on patients in the lowest income group, access to specialized care varies, and the use of hydroxyurea, an approved medication that can reduce SCD-related pain crises, remains inconsistent.
“Understanding regional differences in sickle cell disease can help us to identify and address gaps in care,” said Peprah, who is also the director of the Implementing Sustainable Evidence-based interventions through Engagement Lab at NYU School of Global Public Health.
Study reviewed 14 years of hospital data
To explore regional differences in SCD hospitalizations across New York State, researchers retrospectively analyzed data from the Statewide Planning and Research Cooperative System, a publicly available, all-payer database that collects inpatient discharge records from healthcare facilities. The team examined 14 years of data on 42,271 SCD hospitalizations from 2009 to 2022. Because the database did not include patient identifiers, the researchers could not tell whether some people were hospitalized more than once.
Results showed that most SCD hospitalizations involved Black patients (83.6%), which is consistent with the known racial distribution of SCD in the U.S. The largest proportion of hospitalizations involved young adults, ages 18 to 29 years (39.7%), followed by adults ages 30 to 49 (31.8%). There was a nearly even distribution of hospitalizations involving female and male patients (51.5% vs. 48.5%).
Also, 19.5% of hospitalizations were classified as being associated with major illness severity, compared with 5.5% that were classified as having a major risk of mortality, a measure of the likelihood of in-hospital death.
New York City accounted for the largest proportion of hospitalizations (66.1%), followed by the Hudson Valley (11.4%). The overall mean length of stay (LOS) was 5.6 days. It was longest in Central New York (6.3 days) and shortest in the Southern Tier (4.2 days). Mean LOS remained relatively stable across the years studied.
Mean total hospital charges were $38,644.80, and mean total costs were $13,214.70. Long Island had the highest mean total charges ($59,476.30), while New York City had the highest mean total costs ($14,474). According to the study, mean charges and costs remained relatively stable over time.
“This suggests a high sickle cell disease burden on Long Island,” Iloegbu said. “Both Long Island and New York City had high costs, which may suggest that these regions are managing clinically complex cases, or have differences in specialized care or care-delivery practices.”
Severity and mortality risk rose over time
The Southern Tier and Western New York had the highest proportions of major severity hospitalizations (22% each), followed by Long Island (21.2%) and New York City (20.8%). The proportion of major severity hospitalizations rose substantially, from 12.7% in 2009 to 27.3% in 2022.
Long Island had the highest proportion of hospitalizations with a major risk of mortality (9.6%), while New York City had one of the lowest proportions of such hospitalizations (5.5%) despite having the highest total number of SCD hospitalizations.
The proportion of hospitalizations with a major mortality risk rose from 2.9% in 2009 to 12.6% in 2022, and those with a moderate mortality risk increased from 8.3% to 19.9%. Over the same period, the proportion classified as having minor mortality risk fell from 88.8% to 67.4%.
“These findings demonstrate that the burden of SCD hospitalizations is unevenly distributed across regions in New York State,” the researchers wrote. “Efforts to reduce regional inequities in SCD care may benefit from expanded access to specialized care, enhancing clinician training, and improved availability of disease-modifying and curative therapies.”
