Increase the proportion of people with sickle cell disease on Medicare who received disease-modifying therapies — BDBS‑02 Data Methodology and Measurement

The Centers for Medicare & Medicaid Services (CMS) developed the sickle cell disease (SCD) indicator in the CMS Chronic Conditions Warehouse (CCW; www.ccwdata.org) to facilitate SCD research as well as promote measurement quality and consistency.

The CMS SCD indicator is available for internal and external researchers who use data stored in the CMS CCW. The CCW creates a unique beneficiary identifier that can be used to link individual level beneficiary information with multiple files across multiple years of data. The details of the algorithm and the codes used to assign the indicator have been documented in the CCW (www.ccwdata.org).

The CCW uses diagnosis codes to identify SCD. The algorithm requires three or more of any claim type (not including pharmacy claims) during a five calendar year "look-back period (e.g., 2016 data would glean from claims data 2012 through 2016). Given that SCD is a chronic life-long health condition, a five-year look-back period was appropriate to best identify Medicare beneficiaries with SCD. Because individuals with SCD tend to have many encounters with the healthcare system, the algorithm required for claims to be separated by one day to account for multiple claims that may be associated with a single healthcare visit. There is evidence that claims-based algorithms are highly sensitive for SCD if three claims are required. The diagnosis codes employed by this algorithm are consistent with the specifications employed by the CMS OMH as well as other notable studies.

An ICD-9-CM or ICD-10-CM diagnosis code found on three or more claims of any type (except prescription drug), any position, during the five year "look-back" period.

Valid ICD-9-CM Diagnosis Codes

282.60 Sickle-cell disease, unspecified

282.61 Hb Sickle-cell disease (without crisis)

282.62 Hb Sickle-cell disease with crisis

282.63 Sickle-cell/ Hb-C disease (without crisis)

282.64 Sickle-cell/ Hb-C disease with crisis

282.68 Other sickle-cell disease (without crisis)

282.69 Other sickle-cell disease with crisis

282.41 Sickle-cell thalassemia (without crisis)

282.42 Sickle-cell thalassemia with crisis

Valid ICD-10-CM Diagnosis Codes

D57.00 Hb Sickle-cell disease with crisis, unspecified

D57.01 Hb-SS disease with acute chest syndrome

D57.1 Sickle-cell disease (without crisis)

D57.20 Sickle-cell Hb-C (without crisis)

D57.211 Sickle-cell Hb-C with acute chest syndrome

D57.212 Sickle-cell Hb-C with splenic sequestration

D57.219 Sickle-cell Hb-C with crisis, unspecified

D57.40 Sickle-cell thalassemia (without crisis)

D57.411 Sickle-cell thalassemia with acute chest syndrome

D57.412 Sickle-cell thalassemia with splenic sequestration

D57.419 Sickle-cell thalassemia with crisis, unspecified

D57.80 Other sickle-cell disorders (without crisis)

D57.811 Other sickle-cell disorders with acute chest syndrome

D57.812 Other sickle-cell disorders with splenic sequestration

D57.819 Other sickle-cell disorders with crisis, unspecified