Incidence and Burden of the Myelodysplastic Syndromes

Abstract

Since 2001, cases of myelodysplastic syndromes (MDSs) have been tracked by cancer registries. Examining registry data in the USA, the reported age-adjusted incidence of MDS per 100,000 was 3.3 per year for 2001–2003 and 4.9 per year for 2007–2011, with increases likely a result of growing awareness of reporting requirements. However, active case-finding methods repeatedly demonstrate that population-based registries have underestimated the incidence of MDS due to underreporting and underdiagnosis. Using keyword search strategies of electronic pathology reports or other novel case capture methods, the true incidence of MDS has been estimated between 5.3 and 13.1 per 100,000. Using Medicare billing claims data, the incidence of MDS per 100,000 in patients aged ≥65 years has been estimated between 75 and 162. MDS prevalence is estimated to be 60,000 and –170,000 in the USA and projected to grow. Epidemiologic data can help estimate the burden of MDS and expose unmet clinical needs. For example, patients with MDS receiving transfusions had significantly higher reported health care costs versus those that did not (3-year mean of $88,824 vs $29,519). Epidemiologic data also revealed that most MDS patients receiving transfusions do not receive active therapies, despite strong evidence that hypomethylating agents and lenalidomide significantly reduce transfusion burden. Other unmet needs identified by epidemiologic studies include high need for treatment options after failing first-line therapy and shared decision making by older MDS patients.

The Incidence and Health Care Resource Burden of the Myelodysplastic Syndromes in Patients in Whom First-Line Hypomethylating Agents Fail

“…Using a U.S. commercial health insurance claims database, we found an MDS incidence of 69.9/100,000, which is close to what we found in our previous Surveillance, Epidemiology, and End Results (SEER)-Medicare study (75/ 100,000) [5]. MDS prevalence in the current study was estimated to be 155/100,000, which is within range of prior reports [1,6]. Based on these results, it is estimated that almost 500,000 people in the U.S. are living with MDS.…”

The genetics of myelodysplastic syndrome: from clonal haematopoiesis to secondary leukaemia

“…MDS is among the most common of the hematologic malignancies, with current estimates placing its incidence in the United States between 5.3 and 13.1 cases per 100,000 persons 3 . In adults, advanced age is the predominant risk factor for developing MDS, with a median age at diagnosis of 71–76 years 4,5 .…”

Genetics and epigenetics of myelodysplastic syndromes and response to drug therapy: new insights

“…9 This may be a reason for the incidence of MDS in seventh and eighth decades of life. 10 However, the prognosis system of these mutations has not been taken into account and since these mutations generally occur in genes encoding spliceosome components, chromatin remodeling genes, epigenetic pattern regulators as well as transcription factors, their use in target therapy is faced with problems. 11 …”