Incidence and Burden of the Myelodysplastic Syndromes

Area of Science:

• Hematology
• Epidemiology
• Oncology

Background:

• Cancer registries track myelodysplastic syndromes (MDS) cases since 2001.
• Reported MDS incidence in the USA increased from 3.3 (2001-2003) to 4.9 (2007-2011) per 100,000.
• Population-based registries likely underestimate MDS due to underreporting and underdiagnosis.

Purpose of the Study:

• To estimate the true incidence and prevalence of MDS in the USA.
• To identify unmet clinical needs in MDS patient care.
• To analyze healthcare costs associated with MDS, particularly for patients requiring transfusions.

Main Methods:

• Utilized keyword search strategies on electronic pathology reports for novel case capture.
• Analyzed Medicare billing claims data for patients aged 65 years and older.
• Compared healthcare costs between MDS patients with and without transfusions.

Main Results:

• True MDS incidence estimated between 5.3 and 13.1 per 100,000, significantly higher than registry data.
• MDS incidence in Medicare beneficiaries (≥65 years) estimated at 75-162 per 100,000.
• MDS prevalence estimated at 60,000-170,000 in the USA, with projected growth.
• Patients with MDS requiring transfusions incurred substantially higher healthcare costs ($88,824 vs $29,519).
• Most MDS patients receiving transfusions do not receive active therapies like hypomethylating agents or lenalidomide.

Conclusions:

• Epidemiologic data reveal significant underestimation of MDS incidence by traditional registries.
• Substantial unmet needs exist, including the need for effective therapies post-first-line treatment and improved shared decision-making for older patients.
• Targeted interventions and improved diagnostic methods are crucial for addressing the true burden of MDS.