Geographic and temporal trends in sickle cell disease hospitalizations in New York State Free

Introduction: Sickle cell disease (SCD) is the most common inherited blood disorder in the United States, disproportionately affecting individuals of African descent and other racial and ethnic minorities. In New York State, which accounts for approximately 10% of the national SCD population, significant disparities in disease outcomes, healthcare utilization, and access to specialized care have been documented. Despite advances in treatment, including hydroxyurea and chronic transfusions, many individuals with SCD continue to experience frequent hospitalizations, prolonged lengths of stay, and increased mortality risk—trends often driven by racial, socioeconomic, and regional disparities.

Objective: To assess regional and temporal disparities in patient outcomes, including length of hospital stay, severity of illness, and risk of mortality, among individuals hospitalized with SCD in New York State from 2009 to 2022.

Methods: This retrospective study utilized data from the Statewide Planning and Research Cooperative System (SPARCS), an all-payer administrative database capturing inpatient and outpatient discharge records across New York State health facilities. The analytic sample included 42,271 SCD hospitalization records between 2009 and 2022. Descriptive statistics and chi-square tests were used to evaluate differences in patient demographics, severity of illness (SOI), risk of mortality (ROM), and hospital resource utilization across health service areas and over time.

Results: Among the 42,271 SCD hospitalizations, most patients were aged 18–29 (40%) or 30–49 (32%) and identified as Black (83%). New York City accounted for the majority of SCD hospitalizations (66%), followed by the Hudson Valley (12%). The average length of stay (LOS) was 5.6 days (SD=6.4), with Central NY (6.3 days) and Hudson Valley (6.2 days) having the longest stays. Major severity cases were most prevalent in the Southern Tier and Western NY (both 22%). From 2009 to 2022, the proportion of major severity cases increased from 17% to 27%, alongside a rise in major mortality cases from 3% to 13%. Long Island exhibited the highest mortality burden (10%), while New York City had a moderate mortality rate (5%) despite high hospitalization volume. Central NY had the longest LOS for major severity cases (12.47 days), and Southern Tier had the shortest (5.49 days). Significant regional and temporal differences were observed across all severity and mortality levels (p<0.001).

Conclusions: These findings underscore both geographic and temporal disparities in the severity and outcomes of SCD hospitalizations across New York State. The growing proportion of high-severity and high-mortality hospitalizations highlights the increasing clinical complexity and unmet care needs among individuals with SCD. Notably, major mortality cases rose from 3% in 2009 to 13% in 2022, while minor mortality classifications declined from 89% to 67%, and moderate mortality cases increased from 8% to 20% over the same period. This shift toward higher-risk hospitalizations may reflect disruptions in care continuity and access associated with the COVID-19 pandemic, as well as persistent systemic barriers to optimal disease management. These patterns emphasize the critical need for further investigation into the underlying drivers of these regional and temporal disparities. Targeted, region-specific, and time-sensitive health system interventions—such as enhancing access to comprehensive care models, expanding transition services, and improving provider education—are essential to improving survival outcomes and reducing inequities in care for individuals living with SCD in New York State.