The Impact of MDS Diagnosis on Patients’ Quality of Life

Zahra Mahmoudjafari, PharmD, BCOP, DPLA, provides insight on the impact myelodysplastic syndrome has on patients’ quality of life.

Ryan Haumschild, PharmD, MS, MBA: I want to pivot a little bit further and talk about manifestations. Constantly, people will come and talk about what are the myelodysplastic manifestations that we’re hearing about? Dr Mahmoudjafari, I’d like to turn it back over to you and hear your input on some of the clinical manifestations of myelodysplastic syndrome and how you would answer that. What should we be aware of around this malignancy?

Zahra Mahmoudjafari, PharmD, BCOP, DPLA: This relates closely to quality of life. Typically, what brings patients in to see us is that they’re complaining of overwhelming fatigue, or they’re very short of breath, and upon further testing, we understand that they have a low red blood cell count and they’re anemic. Because they’re subcytopenic, they may present with bruising or bleeding because of that low blood cell count. They may also have petechiae, also more importantly, have frequent infections because of that low white blood cell count. I always call it the trifecta, 1 of the 3, but typically, it’s in conjunction with one another.

Ryan Haumschild, PharmD, MS, MBA: You talked about quality of life. I feel like that’s an area that keeps emerging because quality of life can impact someone’s ability to show up to work. It can impact their ability to function and their ability of the caregivers around there to provide support. I’d like to dig into that one a little bit deeper. Dr Mancini, I’m curious of your thoughts. What is the impact of myelodysplastic syndrome on patients’ quality of life, where do really see that going, and how do you see it impacting the patients you see daily?

Robert Mancini, PharmD, BCOP, FHOPA: Most studies looking at quality of life in MDS have shown that the primary driver in terms of health-related quality of life in these patients is the anemia associated with MDS. Those studies have shown that lower hemoglobin levels as well as dependence on those red blood cell transfusions were associated with worse health-related quality of life. There’s a really good special report published by the MDS Foundation back in 2008 that looked at the quality of life in MDS based on information gathered from patient and caregiver forums that they conducted. MDS often requires, as Dr Mahmoudjafari mentioned, frequent bloodwork and transfusions, whether those be red cell or platelet transfusions. It also requires provider visits. In addition, most patients do have anemia that impacts quality of life through issues with that chronic fatigue as was already mentioned. As you can imagine, one of the biggest issues for our patients is transportation because they need to come in all the time for these lab draws, clinic visits, or transfusions. This is a big problem, so do you have someone who lives close to a treatment center that can easily get to and from the treatments or visits, or someone who is further out that would have to drive an hour or more frequently for each of these visits. Beyond distance, it’s just overall ability to travel, too. You have many patients who cannot drive because of age or debility, and that can also impact access to care through those problems. Just imagine how the frequent health care needs impact quality of life from the perspective of freedom to travel, stay out of the health care system, and of course, the financial toxicity component of that.

Ryan Haumschild, PharmD, MS, MBA:You brought up a great point around the transportation vulnerability. With these patients, we know that they’re transfusion-dependent sometimes, so having to constantly go to get transfusions can be burdensome. When you think about some electronic medical records or some strategies around social determinants of health, some health systems or practitioners are utilizing some of that when they’re developing treatment strategies. How do you understand the transportation vulnerability of a patient? You should consider that as part of the treatment, because ultimately, we can work to stabilize a patient and choose the best therapy possible, but if they’re not able to get the treatment, they may not be successful. If they’re supposed to be transfusion dependent and we don’t have an intervention that reduces that burden on them, ultimately, they may progress in their disease. So, I appreciate you highlighting that and then, lastly, building upon the quality of life. This is something that needs to be so important to us as practitioners to make sure that we’re doing everything possible for these patients.

Transcript edited for clarity.

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