Abstract
Sickle cell disease (SCD) is a rare but costly condition in the United States. Super-utilizers have been defined as a subset of the population with high health care encounters or expenditures. Although super-utilizers have been described in other disease states, little is known about super-utilizers among adults with SCD. This study aimed to characterize the differences in expenditures, overall health care 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 claim databases from 2016 to 2020. Encounters and expenditures were analyzed from inpatient, outpatient, and emergency department settings. Differences in encounters and expenditures between lower-utilizers and super-utilizers were compared using logistic regression. Among super-utilizers, differences in encounters and expenditures were compared according to incidences of pain episode encounters. The study population included 5666 patients with commercial insurance and 8600 with Medicare. Adjusted total annual health care expenditure was 43.46 times higher for super-utilizers than for 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 than patients with a high number of pain episode encounters. Our findings demonstrate the contribution of expensive outpatient care among SCD super-utilizers, in which analyses of high expenditure have largely focused on short-term care. Future studies are needed to better understand super-utilizers in the SCD population to inform the effective use of preventive interventions and/or curative therapies.