Characteristics of US Patients with Myelodysplastic Syndromes: Results of Six Cross-sectional Physician Surveys
Open accessAbstract
BACKGROUND: Myelodysplastic syndromes (MDS) comprise a group of pathologically and cytogenetically distinct bone marrow disorders. Little is known about the characteristics of MDS patients, including their pathological and prognostic classifications, cytopenias, transfusion and supportive care needs, and treatment regimens. We describe these characteristics in a large group of recently diagnosed and existing (ie, established) MDS patients. METHODS: We conducted six consecutive cross-sectional surveys among US hematology and medical oncology specialists (identified from an American Medical Association [AMA] database of physicians who administer chemotherapy) between June 2005 and January 2007. A questionnaire collected data on the characteristics and treatment patterns of the 4-10 most recently seen MDS patients for each physician, including demographic data, transfusion needs, treatment approaches, and consideration for clinical trials or bone marrow transplantation. RESULTS: A panel of 101 physicians who were geographically representative of physicians registered with the AMA characterized 614-827 patients per survey, for a total of 4514 responses. Among recently diagnosed patients, 55% were male (95% confidence interval [CI] = 52% to 59%), the median age at diagnosis was 71 years (range = 65-80 years), and 10% (95% CI = 8% to 12%) had MDS secondary to chemotherapy, radiation therapy, or environmental exposure. The median duration of MDS in established patients ranged from 13 to 16 months over the six surveys. Among recently diagnosed MDS patients, fewer patients with lower-risk disease than with higher-risk disease were dependent on either red blood cell transfusions (22% vs 68%) or platelet transfusions (6% vs 33%). More than 50% of all newly diagnosed and established patients used erythropoiesis-stimulating agents. A small percentage of all patients either had had or were being considered for bone marrow transplantation (recently diagnosed: 4%; established: 4% or less) or were being treated on clinical trials (recently diagnosed: 1%; established: 4% or less). CONCLUSIONS: MDS patients in the United States have substantial transfusion needs, and use of erythropoiesis-stimulating agents and are seldom considered for bone marrow transplantation or clinical trials. These data may be useful in characterizing the health care resource use and pharmacoeconomic impact of MDS in the United States.
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Historically, the proportion of patients with MDS who proceed to HSCT is <10%.
“Historically, the proportion of patients with MDS who proceed to HSCT is < 10%.36”
From Eprenetapopt (APR-246) and Azacitidine in <i>TP53</i> -Mutant Myelodysplastic Syndromes (2021) · cites this paper as [36]
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- Authors
- Sekeres, M. A., Schoonen, W. M., Kantarjian, H., List, A., Fryzek, J., Paquette, R., & Maciejewski, J. P.
- Affiliations
- Cleveland Clinic (US)
- Amgen (United States) (US)
- The University of Texas MD Anderson Cancer Center (US)
- Venue
- JNCI: Journal of the National Cancer Institute
- Publisher
- Oxford University Press (OUP)
- Published
- 2008-11-05
- Volume
- 100
- Issue
- 21
- Pages
- 1542-1551
- ISSN
- 0027-8874 (ISSN-L)
- 1460-2105
- PMC
- PMC2579314
- OpenAlex
- W2099071696
- Cited by
- 248
- References
- 28
- Citations by year
- 2026: 4 · 2025: 8 · 2024: 4 · 2023: 12 · 2022: 9 · 2021: 8 · 2020: 11 · 2019: 11 · 2018: 14 · 2017: 15 · 2016: 12 · 2015: 11 · 2014: 30 · 2013: 20 · 2012: 21
- FWCI
- 12.38
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- JNCI Journal of the National Cancer Institute (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- HighWire Press Open Archive (submittedVersion)
- Funders
- National Institutes of Health
- National Center for Research Resources (U54 RR19397-03, U54RR019397)
- Topics
- Health Sciences › Medicine › Hematology › Acute Myeloid Leukemia Research
- Health Sciences › Medicine › Emergency Medicine › Hematological disorders and diagnostics
- Health Sciences › Medicine › Hematology › Hematopoietic Stem Cell Transplantation
- Keywords
- myelodysplastic syndrome, patient characteristics, transfusion requirements, red blood cell transfusion, platelet transfusion, erythropoiesis-stimulating agents, bone marrow transplantation, clinical trial participation, risk classification, supportive care needs, treatment patterns, health care utilization, pharmacoeconomics, United States patients, cytopenia
- MeSH terms
- Darbepoetin alfa, Adult, Aged, Blood Transfusion, Cross-Sectional Studies, Erythropoietin, Female, Health Resources, Hematinics, Humans, Male, Middle Aged, Myelodysplastic Syndromes, Physicians, Prognosis, Surveys and Questionnaires, Retrospective Studies, United States, Bone Marrow Transplantation, Granulocyte-Macrophage Colony-Stimulating Factor, Granulocyte Colony-Stimulating Factor, Economics, Pharmaceutical, Health Care Surveys
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