Hematologist encounters among Medicaid patients who have sickle cell disease

Sickle cell disease (SCD) is a group of inherited hemoglobin disorders, affecting individuals from birth throughout their lifespan.Although life expectancy for those with SCD has increased into adulthood in recent decades, 1 the effects of the disease are cumulative and lead to significant illness and reduced quality of life for many. 2 Hallmarks of this disease include acute and chronic pain episodes, risk of organ damage and stroke, and high acute health care utilization.3 SCD affects 100 000 persons in the United States, and millions more globally.4 In the United States, because SCD affects primarily Black persons and other persons of color, there are increased challenges for patients, families, and providers owing to institutional and systemic racism.5,6 Access to comprehensive, quality care for those with SCD has been shown to improve outcomes and lower acute care utilization (hospitalization and emergency room encounters), particularly among adults.[7][8][9][10] Although comprehensive care for children with SCD is not universally available, there are centers providing such care in most US urban areas.11 Health care providers specializing in nonmalignant hematology for adults, however, are rare.12,13 Upon transitioning out of pediatric care, adults encounter a dearth of providers knowledgeable in SCD and a fragmented health care system.13 Multiple models have been proposed for best practice care for SCD, [14][15][16][17] but even the simplest of these models, that of a hematologist and primary care physician comanaging a patient, is infrequently seen in practice.17 Although various barriers to care have been identified, 15 the percentage of the SCD population that do not receive care is unknown.The Sickle Cell Data Collection (SCDC) program is a state-based, population-wide public health surveillance system for SCD.SCDC data from 2 states with large populations of people living with SCD, California and Georgia, were analyzed to quantify how often those with SCD receive care from a hematologist.A retrospective analysis was performed on Medicaid claims for individuals with SCD.Individuals with SCD are identified in each state by linking, de-duplicating, and applying a validated case definition to multisourced surveillance data that span from 2004 through 2019.[18][19][20] Individuals from the states' SCDC cohorts with continuous Medicaid enrollment from January 1, 2016 to December 31, 2018 were included in this analysis to capture all inpatient and outpatient health care encounters.Patient age was calculated for the first day of the study period and categorized as pediatric (,21 years) or adult (211 years).Hematologist encounters were identified using the National Provider Identifier of the rendering provider listed in claims.21 Providers with health care provider taxonomy codes 207RH0000X, 207RH0003X, or 2080P0207X were categorized as a hematologist.To calculate an individual's total hematologist encounters, claims were de-duplicated by assuming an individual had a maximum of 1 encounter with a given provider per day.