Comparing Super-Utilizers and Lower-Utilizers Among Commercial- and Medicare-Insured Adults with Sickle Cell Disease.

Sickle cell disease (SCD) is a rare but costly condition in the US. Super-utilizers have been defined as a subset of the population with high healthcare encounters or expenditures. While super-utilizers have been described in other disease states, little is known about super-utilizers among adults with SCD. This study aimed to characterize differences in expenditures, overall healthcare encounters, and pain episode encounters between super-utilizers (top 10% expenditures) and lower-utilizers with SCD (high: top 10-24.9%, moderate: 25-49.9%, and low: bottom 50% expenditures). A retrospective longitudinal cohort of adults with SCD were identified using validated algorithms in MarketScan and Medicare claims databases from 2016-2020. Encounters and expenditures were analyzed from inpatient, outpatient, and emergency department settings. Differences in encounters and expenditures between lower- and super-utilizers were compared with logistic regression. Among super-utilizers, differences in encounters and expenditures were compared according to incidence of pain episode encounters. The study population included 5,666 commercial-insured and 8,600 Medicare-insured patients. Adjusted total annual healthcare expenditure was 43.46 times higher for super-utilizers as compared to low-utilizers among commercial-insured and 13.37 times higher in Medicare-insured patients. Among super-utilizers, there were patients with few pain episode encounters who had higher outpatient expenditures compared to patients with a high number of pain episode encounters. Our findings demonstrate the contribution of expensive outpatient care among SCD super-utilizers, where analyses of high expenditure have largely focused on acute care. Future studies are needed to better understand super-utilizers in the SCD population to inform the effective use of preventative interventions and/or curative therapies.