Quality of Life Dispairities for Patients with MDS | Somedeb Ball, MBBS | #ASH24

Hi, I'm doctor Somedeb Ball. assistant professor of medicine in hematology oncology at Vanderbilt Ingram Cancer Center in Nashville, Tennessee. So, in this project, we looked at, the impact of sex, race, disease and treatment related factors on quality of life and financial burden on patients with myelodysplastic syndrome, myelodysplastic syndrome, and or neoplasm is a disease primarily seen in non-Hispanic white male population.

So there's not a whole lot of data out there on how sex and race impacts the outcomes of these patients, or even, you know, impacts the quality of life or financial burden as well. Quality of life can be impacted by either MDS related symptoms or the treatment that we do for MDS patients that can also cause some adverse events and that can impact patients quality of life as well.

And this is getting more and more importance, now in the MDS field as, you know, quality of life is now being considered as an important clinical trial endpoint as well. In particularly in patients with lower risk MDS where we tend to see, more anemia and more symptoms related to anemia. Financial toxicity is a term that explains the burden, on patients due to cost of cancer care.

And it's it's it's important across the different cancer fields and particularly more so in myelodysplastic syndrome again, because we are seeing an emergence of, a host of medications, which are we are lucky to have, which are more effective, but also high cost medications. So, you know, we need to take into consideration the financial well-being of patients because that can impact quality of life, treatment, adherence in all outcomes in this patient population.

So that's what we try to do in this project. Try to see how sex and race interplays there and what is the quality of life and financial burden across different subgroups based on sex and race. And also, we looked at disease and treatment related factors as well.

What we found in our study and some of the other studies that female patients with MDS are generally younger at diagnosis compared to males. So we are looking at anyway in the younger population and as you can see, you know, that can impact, the socio economic status of a patient, the support they have with their family and caregivers, which becomes very important because a lot of these patients get treated, you know, with frequent health care visits, they might have to come in for transfusions, for the anemia.

So, and all this in turn affects the quality of life as well. So I think, economic family economics and socio economic, kind of aspect, on the patient side has an interplay, with the MDS care generally.

There's not a whole lot of, you know, it's not seen predominantly in black patients. So we don't have a lot of data. But it was striking to us to see that, patients within the black race population had a higher physical burden, which is the physical aspect of quality of life in the tool that we used and also financial burden.

And I think, you know, this goes back to, several things that we, we can think about, like what are their initial socio economic standpoint? Do they have access to care, and do they have access to a better tertiary care center where, most of these rare diseases get treated with experts? And, you know, that impacts the access to therapies and treatment decisions, which may and may affect some of this as well.

And I have seen patients who come from the some of these communities, racial, ethnic communities, who are underprivileged, who don't have rides to come to cancer center as well and get the transfusion that they need. And we know that there's a clear relationship to the hemoglobin level. And the transfusion with how patients feel, in MDS.

Patients, we utilize this tool that is very MDS specific that looks at quality of life, which is QUALMS tool. There are a lot of tools out there, but this one it accounts for the symptoms that we, see in anemia patients and in MDS, like fatigue and other things. And these findings, you know, tell us that patients with anemia, even if, even if that's not significant enough, even less than ten gram per deciliter, which is a lot more than, you know, something that would mandate a transfusion.

Even that can impact quality of life. So we should be mindful of that? We should not wait, for patients to fall to the transfusion needing level. We may, we now have tools that can act even earlier, like luspatercept or some of the other medications that can improve this anemia even earlier, before patients can get to the transfusion stage.

So, you know, the key finding there is we can we should probably act, before it gets worse. And also the RBC transfusion dependance that has shown in that has been shown in different studies that that is related to overall survival in these patients. Because we are talking about lower risk MDS here, they don't have immediate threat of going into acute myeloid leukemia.

That's not the threat. The threat is they actually die with MDS and not from MDS. They actually die from complications from transfusions, cardiovascular risk factors that comes with those transfusions or even by anemia itself, which can cause cardiac remodeling in these patients. So I think, you know, the that finding, tells us that we may need to act quickly and sooner in these patients and so that we can improve the quality of life and in turn, improve overall outcomes.

One of the thing we found is, is a food for thought, and we didn't quite understand or could not address it from the study itself is the Hispanic patients had a higher, chance of risk of going into acute myeloid leukemia, which is the next stage, you know, MDS, you know, for a long, long time was looked at as a pre leukemic condition.

But if we now know that it's in itself is a blood cancer, but it can go into more aggressive blood cancers like acute myeloid leukemia. And we saw that Hispanic populations had a higher risk of going into that than in non-Hispanic. We looked at different factors such as, you know, mutations and gene defects that happens in those, in patients with MDS.

We did not find any significant difference, but that may be because of the smaller sample size in our study. I think the future studies should look at this little more. And we are learning, you know, different other factors play a role in this, progression of MDS to AML. So we need to see what's special or what's different or unique about Hispanic population that makes them go more into acute myeloid leukemia, because that can really significantly shorten their lifespan with the disease MDS.