Diagnostic testing, treatment, cost of care, and survival among registered and non-registered patients with myelodysplastic syndromes

Considering current reliance on cancer registry data, we sought to assess the potential for bias in myelodysplastic syndrome (MDS) registration using SEER-Medicare data 2001-2005. Using a validated claims-based algorithm, we identified and compared registered and non-registered MDS patients, and found that median cumulative survival was 18 and 28 months, 74% and 64% used erythropoiesis-stimulating agents (ESAs), and average 6-month health care cost was $24,249 and $21,750, respectively. While most non-registered MDS patients showed resource utilization and survival characteristics consistent with lower-risk MDS, a subset was registered as acute myeloid leukemia (7.6%) and accounted for early mortality.