Abstract
Deletion of the long arm of chromosome 5 (5q) is the most common chromosomal abnormality seen in MDS; however, there is little information about treatment and diagnostic patterns, especially in Latin America. This study aimed to understand the real-life approach to diagnosis and treatment of MDS del(5q) in Mexico in 2012.
Overall clinical practice was investigated through a physician face-to-face survey. Eligible participants were 10 hematologists and/or hemato-oncologists with at least 5 years experience treating patients with MDS and practicing in one of 5 major public hospitals in Mexico City (IMSS, ISSSTE or MoH) and/or two private hospitals (Español and Angeles Lomas). The interview covered 6 sections: (1) physician´s point of view about the disease and MDS and/or del(5q) patient profile; (2) diagnosis; (3) treatment patterns, including country-specific barriers for each; (4) patient access to appropriate drug treatment, (5) knowledge and perception about innovative drugs such as lenalidomide; and (6) areas of opportunity in diagnosis and/or treatment.
Physicians described patient flow for most in the public sector as starting at Family Medicine Units and second level hospitals, which tend to basic health issues; eventually most are referred to a hematologist in third-level high-specialty hospitals. In private practice about 60% first contact a general physician and all eventually get referred to a specialist; the other 40% go directly to a hematologist. Furthermore, ∼80% who start treatment in the private setting eventually switch to public healthcare since MDS treatment is for life and cost is of great concern. Even though interviewed physicians have a clear sense about MDS diagnosis, they all agree that there is a lack of information about the disease within the medical community, which complicates even further the diagnosis and early patient referral. Eight out of 10 doctors recognized del(5q) as a low-risk disease; the rest considered it as having rapid progression to leukemia, which is a misconception. In practice, 9 out of 10 said MDS is usually diagnosed by exclusion; however, all agreed that del(5q) abnormality diagnosis needs to be identified through karyotyping. All physicians agree that most patients seek medical attention due to fatigue and constant bleeding and receive treatment for anemia prior to reaching a specialist; however, in the public sector they tend to arrive in a more advanced disease stage. Research indicated that the tests to detect MDS are fully covered by the public health system, however, not for detecting del(5q) subtype. In the public sector CBC or blood smear (US$20-30 out-of-pocket) and bone marrow aspiration or biopsy are free of charge (US$300-400 out-of-pocket). Conversely, karyotyping for MDS is only covered by the second largest provider (ISSSTE, covering 9% of the population) and FISH testing is rarely done overall; however, for both, most of the time they are paid out-of-pocket (US$200-500).
Treatment preferences and duration vary greatly, mainly because of drug availability, physician disease expertise and patients’ willingness to pay out-of-pocket for appropriate testing/drugs. Physicians acknowledge lenalidomide as the best treatment option for del(5q) MDS (some are already using lenalidomide for myeloma); however, due to its high cost and restricted availability in the public sector, they use whatever is readily available. Thalidomide is usually used in 1st line treatment, cyclosporine and prednisone as 2nd line and hypomethylating drugs, such as azacitadine, or bone marrow transplant as 3rd line. Additionally, due to misdiagnosis and/or co-morbidities, patients are treated with erythropoietin (anemia), GCSF (leucopenia), platelet agonists (thrombocytopenia), and iron chelators (iron excess due to transfusions).
Most physicians conclude that in order to have appropriate del(5q) MDS diagnosis and treatment there is a clear opportunity to increase continuous medical education on the disease as well as training to spur more highly qualified geneticists. Moreover, there is a need to have more reference centers and genetic testing laboratories and greater availability of del(5q) karyotype testing in the public sector. Finally, results from this research indicates that improving access to novel drugs, such as lenalidomide, will expand the treatment options available for del(5q) MDS in Mexico.
No relevant conflicts of interest to declare.
Author notes
Asterisk with author names denotes non-ASH members.
