Identifying sickle cell disease cases using administrative claims.

Objective: To develop and test the accuracy of administrative claims method for identifying children with sickle cell disease (SCD) to enable quality of care assessments among children enrolled in Medicaid.

Methods: All administrative claims with an SCD diagnosis were obtained from Michigan Medicaid from 2008 to 2011 for children ≤18 years, representing 1828 individuals. All Medicaid claims were obtained for these children and classified into categories on the basis of SCD care; these classifications were used to develop 37 alternative case definitions for identifying children with SCD. Children with ≥1 SCD claim in 2010 or 2011 were identified as confirmed SCD or not SCD using the gold standard of Michigan newborn screening administrative records. Measures of performance were calculated for each case definition for eligible children in 2010. Further validation of the case definitions was performed among eligible children in 2011.

Results: In 2010, a total of 938 children met eligibility criteria and were linked to newborn screening records; 605 (59%) were confirmed SCD, and 333 (32%) were not SCD. Measures of performance varied among the 37 case definitions, and the 4 best case definitions on the basis of the sensitivity, specificity, and area under the receiver operating characteristic (ROC) curve were validated among 924 children meeting eligibility criteria in 2011. The case definition of at least 3 SCD claims in any position identified children with SCD with the most accuracy, with an area under the ROC curve of 0.91 (95% confidence interval 0.89, 0.93).

Conclusions: This definition can be used to facilitate a more accurate identification of children with SCD in future studies. Further investigation is necessary to determine whether this method translates to other populations besides Michigan Medicaid-insured children.