Dr Marlijn Hoeks is an internist-hematologist at Radboud University Medical Centre and works as a transfusion specialist at the Sanquin blood bank. Her fields of expertise include blood transfusion, clinical haematology, haemostasis and benign blood disorders.
As a supporter of the Blood and Beyond initiative, she shared her views on the current blood transfusion landscape in the Netherlands in what has been a unique year, due to the COVID-19 pandemic.
Firstly, from a patient perspective, transfusions are very time-consuming and burdensome. If I think about the elderly patients with co-morbidities that I see, they have to spend a large part of the day on our unit which is of course burdensome. On top of that, patients can often feel unwell the day of their transfusion, and the days following. Once a blood transfusion is complete, patients will feel better for around two weeks, but after that the cycle must start all over again. This of course means they must structure their whole life around this, so it is extremely burdensome for them.
On top of that, this process is time consuming for the healthcare workers, and of course the patient is occupying a hospital bed whilst this treatment is ongoing. If we factor in the costs of the process in terms of the testing and the blood product itself, the financial burden is really high. So in summary, the transfusion process itself is a burden on patients, as well as a burden on hospital capacity and finance.
COVID-19 has led to challenges for blood banks, such as Sanquin where I work, because on top of their usual workload they are collecting plasma donations of donors who recovered from COVID-19 in order to produce convalescent plasma as a potential treatment for COVID-19, but I would say there are still similar level of transfusions occurring and demand is more or less stable.
In terms of access for patients, we saw a big impact from COVID-19 in March and April at Radboud University Medical Centre, when the virus was at its first peak. We had to adapt the support we offered patients, moving to phone and video appointments and consultations with patients. Some of my patients liked it, especially the younger patients who are used to technology, but for elderly patients it was difficult as they do prefer the physical contact with their doctors. There were also non-chronic patients who were reluctant to come into the hospital because they feared getting COVID-19, despite all the safety measures in place.
Another challenge was ensuring adherence among patients. When speaking with patients about adherence to treatment like iron chelation therapy for example, it’s important to be able to look a patient in the eye and see how they react. It’s important to have trust and open conversations about adherence, and for patients to recognize this and admit it to their healthcare professional, so we can look together for possibilities to improve it.
The EUMDS registry tracks MDS patients across 17 countries. We collect real-life data, which is an advantage because the results are more generalizable than randomized clinical trials. The MDS-RIGHT project is a five-year, EU funded project within the EUMDS Registry, which will be concluding at the end of this year. Our philosophy is ‘providing the right care to the right MDS patients at the right time’. An example where this is essential is in chronic anemia of the elderly. It is a common problem and in many cases these patients have MDS, so the timely diagnosis may prevent a reduction in patient health and quality of life.
Through the project, we have produced several treatment and support guidelines for MDS in Europe. This was important because previously, there was a was a lack of quality or consistent guidelines. As a patient, you could go to one hospital and get given advice, before visiting another centre and receiving different advice, which doesn’t give much confidence in the doctors. There is also the fact that patients are a lot more educated now. They are conducting their own research into their conditions, so they are often aware of several options available that they will want to discuss with their healthcare professionals. Quality guidelines equip doctors to be prepared for this and offer the best support.
I think what is important is the development of new drugs, so patients are not transfusion dependent, for the reasons I have already outlined. There are new treatment options that are in development right now, and I hope over time these can reduce the dependency on transfusions, which will of course then increase a patient’s quality of life.
We are currently carrying out some research on point-of-care haemoglobin measurements at home. This works in a similar format to how those with diabetes self-test, but instead of glucose, the patient is measuring their haemoglobin level. This allows for a more patient-managed approach, which is something that we in the Netherlands have been keen to do. The patient can measure themselves against a hospital provided measure and depending on what their results are showing they can decide to come in for a transfusion, or not. So that is exciting and could improve the patient experience overall in the future.