Expert perspective on the clinical burden of myelodysplastic syndrome regarding symptoms, comorbidities, and overall quality of life.
Bart Scott, MD, MS: The most common symptoms that patients with MDS [myelodysplastic syndrome] deal with is fatigue, and that’s primarily a result of anemia. Anemia is a low red blood cell count, and red blood cells are what deliver oxygen through the other parts of our body. You could think of our red cells as energy-carrying cells, so they carry energy to the other cells we have in our body. Because the red cells can be low in MDS, they don’t distribute oxygen as well.
Another interesting aspect of MDS is that it’s not only low blood counts; it’s that the blood cells themselves don’t work as well. Even in patients whose blood counts may not be that low, they can still have a lot of symptoms from their disease because the red cells don’t function as well. That’s 1 of the reasons we, as physicians, don’t set an individual number at which all patients should be transfused for red blood cells, for instance, because many patients can have symptoms at higher numbers of red blood cells because the red blood cells may not function in as good a manner.
There is also an impact between comorbidities and MDS. Patients who have underlying cardiovascular disease or patients who have lung disease may have more aggressive symptoms with higher red blood cell counts than patients who are otherwise healthy. When you’re the treating physician, you have to take the overall health of the patient into account in deciding what type of interventions they should receive.
If you’re thinking about the major burdens of patients and what they experience, by far the most common complaints that I get are related to fatigue: low energy levels. Additionally, there are some patients who have problems with infections because their neutrophil counts are low. Then there are other patients who have problems with bleeding or bruising because their platelet counts are low.
One of the unfortunate aspects of MDS is that the median age of diagnosis is 72. Many patients are diagnosed with this disease in their retirement. They may be planning vacations or time to spend with their grandchildren and other loved ones. Having this diagnosis has a significant impact on their plans, and unfortunately, it tends to occur when people are getting ready to retire. Many patients have transitioned out of their health care coverage that they would have had through their employer, so they are generally under Medicare or Medicaid. That can sometimes be a challenge for physicians and patients to overcome in regard to what can be covered and what is not covered.
That is an issue when it comes to potential curative therapy like allogeneic transplant, but it’s also an issue in what patients may be able to tolerate. There is a clear association between increasing age and comorbidities, so for some patients, they are not able, or they are not candidates for a curative procedure.
It’s not only that the disease has such an impact on their health. It also affects people who are, in some respects, unhealthier just because that they are an older age. I want to emphasize that not all patients are the same, and there are some patients of an older age who do not have comorbidities and who are incredibly healthy who should be considered for curative types of procedures like stem cell transplant.