Administrative data identify sickle cell disease: A critical review of approaches in U.S. health services research

Pediatr Blood Cancer. 2020 Dec;67(12):e28703. doi: 10.1002/pbc.28703. Epub 2020 Sep 17.


To identify people living with sickle cell disease (SCD) and study their healthcare utilization, researchers can either use clinical records linked to administrative data or use billing diagnosis codes in stand-alone administrative databases. Correct identification of individuals clinically managed for SCD using diagnosis codes in claims databases is limited by the accuracy of billing codes in outpatient encounters. In this critical review, we assess the strengths and limitations of claims-based SCD case-finding algorithms in stand-alone administrative databases that contain both inpatient and outpatient records. Validation studies conducted using clinical records and newborn screening for confirmation of SCD case status have found that algorithms that require three or more nonpharmacy claims or one inpatient claim plus two or more outpatient claims with SCD codes show acceptable accuracy (positive predictive value and sensitivity) in children and adolescents. Future studies might seek to assess the accuracy of case-finding algorithms over the lifespan.

Keywords: Medicaid; billing codes; diagnostic codes; healthcare use; sickle cell disease.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, P.H.S.
  • Review

MeSH terms

  • Algorithms*
  • Anemia, Sickle Cell / diagnosis*
  • Clinical Coding / statistics & numerical data*
  • Databases, Factual*
  • Health Services Research / standards*
  • Humans
  • Insurance Claim Review / statistics & numerical data*