Abstract
Introduction
In response to systemic failures in sickle cell disease (SCD) care and sustained community advocacy, the NYC Council enacted Local Law #163, mandating the New York City Department of Health and Mental Hygiene (NYC DOHMH) to enhance support for individuals with SCD and trait. The scale of this public health challenge is significant: in 2023 alone, SCD accounted for approximately 9,000 emergency department visits and over 5,000 hospitalizations across all age groups in NYC. The urgency of the mandate is further clarified by the poor quality of this care. A NYC DOHMH analysis of 2022 hospital data revealed a city-wide average leave-against-medical-advice (LAMA) rate of 14% for adult SCD hospitalizations—triple the overall average of 4.3%—with rates at some hospitals exceeding 40%. This places SCD among the top diagnoses for LAMA, with higher rates seen only for alcohol and opioid-related disorders. These acute care failures are compounded by gaps in chronic disease management, with data showing medication management with hydroxyurea drops sharply as individuals transition from pediatric to adult care.
Methods
We initiated a city-wide quality improvement initiative (2024-2026), evaluated using a pre-post quasi-experimental design. The multi-faceted intervention consisted of:
-Provider Engagement and Education: Dissemination of Health Advisory #15, a Dear Colleague Letter on SCT, and two CME-accredited webinars (“Sickling Not Seeking” and another on SCT) to providers across NYC.
-Data-Driven QI Catalysis: Using hospital-specific LAMA data as a red flag to catalyze root cause analyses at partner hospitals with high LAMA rates, including two major health systems in the city. The partnership supports the implementation of tailored interventions, such as multi-disciplinary, individualized care plans.
-Community and Pediatric Awareness: An initiative to standardize and support SCT counseling as part of routine pediatric practice within the public hospital system.
The primary endpoint is the change in the LAMA rate for adult SCD hospitalizations, using baseline data from the 2022 New York State Department of Health Statewide Planning and Research Cooperative System (SPARCS) inpatient database. Secondary endpoints include 30-day hospital readmission rates, improvements in provider confidence in SCD care, and documentation of SCT counseling.
Results
These improvement efforts are in progress and results reflect implementation status and the impact of the DOHMH's catalytic role. Implementation of educational components is complete, reaching over 1000 of healthcare professionals. The dissemination of hospital-specific data has successfully spurred partner-led QI action. For instance, after receiving its data, one partner hospital completed a root cause analysis, identifying that its high LAMA rate was driven by a small cohort of people with complex needs, and has since implemented a targeted, multi-disciplinary intensive care management model. Another major partner hospital has formally launched its own RCA process in response to the provided data. Baseline data for key endpoints has been established from the 2022 SPARCS database; the city-wide LAMA rate was 14%, and this metric, along with 30-day readmission rates, has been analyzed at the individual hospital level to guide targeted outreach and QI efforts, particularly through case management and standardization of pain protocols. This approach was presented orally at the 2025 Foundation for Sickle Cell Disease Research (FSCDR) Annual Symposium. Outcome data collection is projected to conclude with analysis of the Q4 2026 SPARCS database.
Conclusions
This study represents the first large-scale intervention of a municipal health department-led strategy to improve SCD care using provider engagement, QI, and novel surveillance metrics like LAMA rates to drive targeted interventions. A central strength of this public health model is the DOHMH's unique capacity to convene diverse stakeholders—including hospital systems, community based organizations (CBOs), and advocates—under a unified mandate. The successful implementation of the initiative's components demonstrates a feasible approach to addressing systemic barriers. Upon completion, this study is poised to generate an evidence-based, scalable model for other urban health systems to address deep-seated inequities for individuals with sickle cell disease.
