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Importance of Support for Caregivers of Transfusion Dependent Patients | Maria Diez-Campelo | #ASH24
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• January 6, 2025
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Description

Dr Maria Diez-Campelo discusses the type of support caregivers need when caring for a patient who is receiving transfusion treatments.

Transcript

My name is Maria Diaz. I'm a hematologist working on the University Hospital of Salamanca in Spain, and I am the current leader for the Spanish MDS team that they are working in, in the file of MDS, working in trying to improve outcomes of these patients. We identified that caregivers need to spend a lot of time and with these activities, not only are combining the base in assisting the patients to the health care visit. Also they need to assist them to other issues related to they are not very good.

The patient are not good and is impacting negatively in several domains on their daily life emotional domain is affecting. Also activities was impaired. They reduce social events. They reduce times with families and friends, and they have several times to stress about these responsibilities. And more interestingly and more important probably also for them is that they also feel that they have and we documented that they have, an impair at work, they work and they lose, several work days, for these responsibilities.

And, and they are worried about it and this, this work productivity and impairments. Yeah.

I think that this is a very important question because the patient is already, as you mentioned, when the patient become transfusion dependent, if you don't treat the patient, after that and after several months or even years, the patient is going to increase these transfusion requirements and impacting a lot of quality of life survival. So is necessary to start treatment everywhere.

And every time that we can, we need to start a therapeutic approach in order to avoid transfusions or decrease transfusions. To try to improve these results and to improve quality of life and overall survival for patients of course, but also the impact on these caregivers.

Well, I think that they need to feel that the patient is on treatment with an active treatment, to feel that there is something working with the disease, because only receiving transfusion the patient feels and probably caregivers also feels that we are doing nothing like only supplement with transfusions. And I think that they need, the some treatments in order to identify that, that the disease is being treated and probably outcomes should be better.

So I think that this is a way, of, achieve this, is needed.

I think this is a very important point, because sometimes when we discuss without thought, it is about the novel treatments in these patients. They are only focused on the price of the novel drug. And and we have several troubles, especially with this subset of patients that require transfusion because, when transfusion not available, they don't need it.

And the authorities sometimes then need to put money for it, for the treatment. And in this regard, I think that this type of study and several others could address the real benefits of this. I avoiding transfusions in this subset of patients. So probably this should be incorporated because is a very cost, costing time and even in money for patients, caregivers, and also for the system, if you are losing days of, work, you are having a negative impact on, on overall productivity. So it's important to address this issue for future studies and to analyze the burden of transfusions in patients and caregivers and the overall cost of this. When we put a treatment in a patient and the patient, become transfusion independent, the cost of their of their health and the system is very low as compared to the patient that requires transfusion.

So we need to move to this type of studies and approaches. It's important to identify that they are sometimes worry about the patients and the health, because we are always focused on the patient. And the caregiver is almost important because they are accompanying the patient in every visit. And I have a feeling that when the patient is very well accompanied with by a very good caregiver, that the overall survival is better and the very good.

The patient that has a good caregiver has lower rates of infections. And related problems with the disease because he's always very, very good care. He has a very good care. It's like, having the doctor or the nurse at home. So it's very important to take them into account and to support the patient support.

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