Administrative Data Sets and Health Services Research on Hemoglobinopathies: A Review of the Literature

Abstract

Large administrative healthcare data sets are an important source of data for health services research on sickle cell disease (SCD) and thalassemia. This paper identifies and describes major U.S. healthcare administrative databases and their use in published health services research on hemoglobinopathies. Publications that used U.S. administrative healthcare data sets to assess healthcare use or expenditures were identified through PubMed searches using key words for SCD and either costs, expenditures, or hospital discharges; no additional articles were identified by using thalassemia as a key word. Additional articles were identified through manual searches of related articles or reference lists. A total of 26 original health services research articles were identified. The types of administrative data used for health services research on hemoglobinopathies included federal- and state-specific hospital discharge data sets and public and private health insurance claims databases. Gaps in recent health services research on hemoglobin disorders included a paucity of research related to thalassemia, few studies of adults with hemoglobinopathies, and few studies focusing on emergency department or outpatient clinic use. Administrative data sets provide a unique means to study healthcare use among people with SCD or thalassemia because of the ability to examine large sample sizes at fairly low cost, resulting in greater generalizability than is the case with clinic-based data. Limitations of administrative data in general include potential misclassification, under-reporting, and lack of sociodemographic information.