Leaving against medical advice as a signal of unmet care needs in adult sickle cell disease hospitalizations

Importance: Sickle cell disease (SCD) affects approximately 100,000 people in the United States, causes life-threatening complications, and shortens life expectancy by decades. Adults with SCD routinely encounter undertreated pain, provider bias, and structural barriers in hospital settings. Objective: To describe patterns of leave against medical advice (LAMA) among adults hospitalized for SCD. Design, Setting, and Participants: Retrospective analysis of inpatient discharge records among adults ages 18 and older in New York City hospitals, 2022-2023, hospitalized for SCD or any reason. Main Outcomes and Measures: The primary outcome was hospital-level LAMA, measured by crude rates and rates adjusting for patient characteristics using Bayesian hierarchical models. The secondary outcome was 30-day all-cause readmissions, stratified by LAMA status. Results: LAMA discharges comprised 14% of SCD hospitalizations and 4% of all-cause hospitalizations. Adjusted hospital-level SCD LAMA ranged from under 5% to 30% (IQR: 10-20%) and was higher than all-cause LAMA in most facilities. Crude SCD LAMA rates exceeded 30% in several hospitals, including those with more than 100 SCD hospitalizations during the study period. Patients with 10 or more SCD hospitalizations accounted for 40% of total SCD volume. Sensitivity analyses accounting for this concentration showed attenuated but persistent variation in SCD LAMA. Over 50% of SCD LAMA discharges were followed by a 30-day readmission compared to 38% of non-LAMA discharges. LAMA was associated with higher adjusted odds of readmissions in both SCD and all-cause hospitalizations. Conclusions: Our findings challenge the assumption that patients are solely responsible for early departures. Leaving against medical advice should be monitored as a signal of unmet care needs in SCD.