Incidence of the myelodysplastic syndromes using a novel claims-based algorithm: high number of uncaptured cases by cancer registries

Cogle, Christopher R.; Craig, Benjamin M.; Rollison, Dana E.; List, Alan F.

doi:10.1182/blood-2011-02-337964

Cited by 192 publications

(140 citation statements)

References 14 publications

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“…3). The median age at diagnosis seems to vary in different countries, being lower in "Eastern" than in "Western" countries: 59 years old in China [22], 60 in Japan [24], 58 in Korea [25], 56 in Thailand [26], and 65 in Taiwan [27], 77 in US [28], 72-73 in Germany [15,16,29], and 65-71 in Italy [15,16,30,31]. However, a new report using a population-based registry data showed a median age of 76 years for Japan [32].…”

Section: Discussionmentioning

confidence: 99%

Myelodysplastic syndromes in South America: A multinational study of 1080 patients

et al. 2015

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There are previously reported data describing differences between Asian and European patients with Myelodysplastic Syndromes (MDS), few direct comparisons based on cancer registration characteristics or using cohorts to validate scoring systems. This is the first study from South-America, which attempts to describe demographic, clinical features, and outcome of MDS patients. We retrospectively analyzed 1,080 patients with de novo MDS from Argentina (635), Brazil (345), and Chile (100). Chilean patients were younger (P 5 0.001) with female preponderance (P 5 0.071). Brazilian series showed a higher predominance of RARS subtype regarding FAB and WHO classifications (P < 0.001). Hemoglobin levels were significantly lower in Brazilian and Chilean series (P < 0.001), and Chilean series also showed a lower platelet count (P 5 0.028), with no differences concerning the neutrophil count, % BM blast, and the distribution of cytogenetic risk groups (P > 0.05). Chilean series depicted a lower overall survival (OS; 35 months vs. 56 months-Argentine; 55 monthsBrazil, P 5 0.030), which was consistent with a higher predominance of the high-risk group according both to the IPSS and IPSS-R (P 5 0.046 and P < 0.001). The IPSS-R system and its variables showed a good reproducibility to predict clinical outcome for the whole South-American population. Epidemiological and clinical characteristics, distribution among prognostic subgroups, the OS, and the access to disease modifying therapies were more similar between Argentinean and Brazilian compared with Chilean MDS series. This will need further analysis in a larger group of patients. Descriptive and comparative studies are necessary to establish epidemiological features useful for public health attitudes to generate suitable therapeutic schemes.

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Section: Discussionmentioning

confidence: 99%

Myelodysplastic syndromes in South America: A multinational study of 1080 patients

et al. 2015

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“…[1][2][3][4] The median age at MDS diagnosis is §70 years. [5][6][7] MDS prognosis depends on disease risk features assessed by the International Prognostic Scoring System (IPSS): patients with low or intermediate-1 (Int-1) IPSS scores have a median overall survival (OS) of several years, whereas patients with intermediate-2…”

Section: Introductionmentioning

confidence: 99%

Safety and efficacy of azacitidine in Belgian patients with high-risk myelodysplastic syndromes, acute myeloid leukaemia, or chronic myelomonocytic leukaemia: results of a real-life, non-interventional post-marketing survey

Béguin

Selleslag

Meers

et al. 2014

Acta Clinica Belgica

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Objectives: We evaluated azacitidine (Vidaza H ) safety and efficacy in patients with myelodysplastic syndrome (MDS), acute myeloid leukaemia (AML), and chronic myelomonocytic leukaemia (CMML), in a real-life setting. Treatment response, dose, and schedule were assessed. Methods: This non-interventional, post-marketing survey included 49/50 patients receiving azacitidine at 14 Belgian haematology centres from 2010-2012. Treatment-emergent adverse events (TEAEs), including treatment-related TEAEs, and serious TEAEs (TESAEs) were recorded throughout the study. Treatment response [complete response (CR), partial response (PR), haematological improvement (HI), stable disease (SD), treatment failure (TF)) and transfusion-independence (TI) were evaluated at completion of a 1-year observation period (1YOP) or at treatment discontinuation, and overall survival (OS), at study conclusion. Results: The median age of patients was 74.7 (range: 43.9-87.8) years; 69.4% had MDS, 26.5% had primary or secondary AML, and 4.1% had CMML. Treatment-related TEAEs, grade 3-4 TEAEs, and TESAEs were reported in 67.3%, 28.6%, and 18.4% of patients, respectively. During 1YOP, patients received a median of 7 (1-12) treatment cycles. Treatment response was assessed for 38/49 patients. Among MDS and CMML patients (n529), 41.4% had CR, PR, or HI, 41.4% had SD, and 17.2% had TF. Among AML patients (n59), 44.4% had CR or PR, 33.3% had SD, and 22.2% had TF. TI was observed in 14/32 (43.8%) patients who were transfusion-dependent at baseline. Median (95% confidence interval) OS was 490 (326-555) days; 1-year OS estimate was 0.571 (0.422-0.696). Conclusions: Our data support previous findings that azacitidine has a clinically acceptable safety profile and shows efficacy.

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“…2,3 Although past registry-based reports using the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) database have suggested an incidence of 10,000 to 12,000 MDS cases per year in the United States, more recent estimates using Medicare claims data suggest that MDS are diagnosed in at least 40,000 to 50,000 patients per year, which would place MDS among the 10 most frequently encountered adult neoplasms. 4,5 Most patients with MDS-even those with lower risk disease features at the time of diagnosis-will die of infectious or hemorrhagic complications related to their disease. 6,7 The only potentially curative therapy, allogeneic hematopoietic stem cell transplantation (HSCT), is currently attempted in less than 5% of patients because of the advanced age and comorbid conditions present in most patients and perceptions about the danger of HSCT.…”

Section: Introductionmentioning

confidence: 99%

Disparity in perceptions of disease characteristics, treatment effectiveness, and factors influencing treatment adherence between physicians and patients with myelodysplastic syndromes

Steensma

Komrokji

Stone

et al. 2014

Cancer

Self Cite

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BACKGROUND: Previous studies have suggested that many patients with myelodysplastic syndromes (MDS) have an incomplete understanding of their disease, which may influence adherence to prescribed regimens and outcomes. METHODS: To better understand physician and patient perceptions about MDS and MDS therapy, the authors conducted 2 surveys in February 2012: 1 for patients with MDS and 1 for health care professionals (HCPs) who cared for patients with MDS. Patient and HCP surveys consisted of 57 and 49 questions, respectively, assessing understanding of MDS, perceptions of specific treatments, barriers to treatment adherence, and treatment experience. RESULTS: In total, 477 complete patient responses and 120 complete HCP responses were received. Among patient responders, 63% were aged 60 years, and 42% had received at least 1 disease-modifying therapy. Of the 61 physician responders, 57% practiced in an academic setting, and 43% practiced in the community; 71% of the 59 nonphysician HCPs worked in the community setting. Only 10% of patients agreed that MDS represented "cancer" compared with 59% of physicians and 46% of nonphysician HCPs (P <.001). Only 29% of patients reported that MDS was ever "curable" compared with 52% of physicians (P <.001). Physicians viewed the potential benefits of active therapy as greater than patients, but patients perceived the actual treatment experience more positively than physicians and differed from physicians in perceived reasons for stopping therapy. CONCLUSIONS: Physicians, nonphysician HCPs, and patients with MDS have disparate views of MDS characteristics and the value and limitations of treatments for MDS. Improved communication and education may increase understanding and achieve better treatment adherence and patient outcomes.

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Incidence of the myelodysplastic syndromes using a novel claims-based algorithm: high number of uncaptured cases by cancer registries

Cited by 192 publications

References 14 publications

Myelodysplastic syndromes in South America: A multinational study of 1080 patients

Myelodysplastic syndromes in South America: A multinational study of 1080 patients

Safety and efficacy of azacitidine in Belgian patients with high-risk myelodysplastic syndromes, acute myeloid leukaemia, or chronic myelomonocytic leukaemia: results of a real-life, non-interventional post-marketing survey

Disparity in perceptions of disease characteristics, treatment effectiveness, and factors influencing treatment adherence between physicians and patients with myelodysplastic syndromes

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