Myelodysplastic Syndromes: Patterns of Care and Outcomes

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DESCRIPTION (provided by applicant): The myelodysplastic syndromes (MDS) are a group of clonal proliferative bone marrow disorders that result in dysmyelopoiesis and peripheral blood cytopenias. Population-based cancer registry data indicate that over 10,000 new cases of MDS are diagnosed in the US annually. Eighty percent of MDS cases are 65 years or older at the time of diagnosis, and observed three-year survival is only 35%. The Congress has identified MDS as being understudied and urged the National Cancer Institute and other federal agencies to further MDS research. The availability of the SEER-Medicare linked database provides a unique opportunity to study the patterns of care and outcomes in MDS patients, both of which are poorly understood. By the end of 2008, the SEER-Medicare database will include SEER data on MDS patients who were diagnosed during 2001 - 2005 and Medicare claims information on these patients up through the end of 2007. We propose to use these data to (1) assess the patterns of care, especially the number of bone marrow tests MDS patients received after diagnosis and the use of various treatment strategies, included the recently approved DNA demethylating agents, azacitidine and decitabine; (2) identify factors that influence the survival of MDS patients after accounting for comorbid conditions; and (3) estimate the direct medical costs related to the treatment of MDS patients. A population-based cohort of approximately 6,716 MDS patients diagnosed at 66 years or older are expected to be included in the study, so will non-cancer controls matched to patients on age, gender, race, SEER region, and comordid conditions. For MDS patients, the frequency of bone marrow tests and the percentage of patients receiving various treatments (e.g. blood transfusions, iron chelation therapy, growth factors, chemotherapy, and demethylating agents) will be evaluated. We will also assess whether the patterns of care are influence by individual or community-based demographic and socioeconomic characteristics. In addition, we will evaluate which factors/characteristics affect the survival of MDS patients, after taking into account comorbid conditions that are important in predicting mortality in MDS patients. Furthermore, we will estimate the Medicare costs incurred by MDS patients from diagnosis through the end of 2007, or date of death, whichever is earlier, and assess which patient characteristics influence costs. By comparing the costs of MDS patients with the costs of non-cancer controls who are matched to MDS patients on age, gender, race, SEER region, and comorbid conditions, we will estimate the medical costs that are attributable to MDS. All analyses will be conducted separately for MDS as one group and for major MDS subtypes. To account for potential changes in the coverage for certain treatments (e.g. growth factors) after Medicare Part D took effect in 2006, we will stratify analyses by two different time periods, 2001 - 2005 (Pre Part D) and 2006 - 2007 (Post Part D). The proposed study will be the first ever to use a large population-based sample of MDS patients to evaluate the patterns of care and MDS survival adjusting for comorbid conditions. It will also be the first to provide a national estimate of the direct medical costs related to the treatment of MDS. Findings from the proposed study will be valuable to clinicians making decisions about the care and treatment of MDS patients and very helpful to policy makers in the allocation of health resources. PUBLIC HEALTH RELEVANCE: The myelodysplastic syndromes (MDS), a group of understudied malignancies of the blood system, are most common in elderly people 65 years or older. The investigators propose to use linked cancer registry files and Medicare claims of about 6,716 MDS patients to study the patterns of care and survival and estimate the direct medical costs related to the treatment of MDS. Findings from the study will be valuable to both clinicians caring for MDS patients and policy maker allocating health resources.