Improving Education and Advocacy in Waldenström Macroglobulinemia

Dr. Shirley D’Sa stresses that ongoing education and self-advocacy are vital to advancing care for Waldenström macroglobulinemia.

Clinician and patient education in Waldenström macroglobulinemia (WM) must be continuous, collaborative, and up to date, according to Dr. Shirley D’Sa, a consultant hematologist and clinical lead for the University College London (UCL) Hospital Centre for Waldenström’s Macroglobulinemia and Associated Disorders.

She also adds that there must be a strong emphasis on patient self-advocacy, interdisciplinary understanding, and both scientific and practical advancements to improve care and outcomes.

D'Sa sat down for an interview with CURE to discuss the topic of pressing educational needs for clinicians and patients managing WM, the role patients play in advocating for their own care, as well as emerging research and clinical strategies that are coming down the pike for individuals with this disease.

D'Sa also serves as well as an honorary associate professor at the UCL Cancer Institute. She also serves as the hematological lead in the joint neurohematology service at the National Hospital for Neurology, Queen Square, London.

CURE: What do you believe are some of the more pressing educational needs for clinicians and patients managing WM today?

D’Sa: It's an interesting point because this is something that I think the entire WM community has been grappling with, if you like, for many years and continues to grapple with. As in any field, new physicians come in, so one has to keep the education going.

It also depends on where WM is treated within a hospital setting. If it's treated by someone specializing in lymphoma, most lymphomas are not IgM-related, so many lymphoma doctors, despite being true experts in their field, have less familiarity with IgM-related problems. On the other hand, doctors who are very familiar with paraproteins, such as myeloma doctors, feel much more comfortable with them. However, the approach in myeloma is different, and the problems are different. WM fits very much between myeloma and lymphoma.

I think the way we work as a community of WM-interested physicians is through the International Workshops where we develop guidelines. We have regular meetings that are very welcoming; in fact, we really encourage people to attend those meetings. For example, we also have the European Consortium on Waldenström's, which is exactly that: a very open forum for physicians interested in WM. These organizations or groups hold regular meetings where the latest research is discussed. We also talk about the messages we want to convey to other specialist and less-specialist colleagues and always include a patient forum at such meetings so that we can update patients on the latest developments, remind them of the progress being made, and actually empower them.

What role do you believe patients should play in advocating for their own care, especially in today’s increasingly specialized healthcare system?

I have to say that in modern healthcare, although there are so many amazing advancements, I think the pressure on health systems means that it is really good if patients are also advocates for themselves. This is not because people don't care, but because as doctors specialize in one area or small areas, they know less about other areas. The old system where things were held together by a general physician is something of the past, really. Patients literally don't have something like a textbook; whatever's wrong with them is just what's wrong with them. So, if you have many medical issues, someone has to bring them all together and be aware of their relevance to the overall treatment, particularly of the WM.

Therefore, I think being your own advocate is very important, also because WM is a small, rare lymphoma, and many doctors will not know the nuances. So again, by producing material, both for clinicians as well as patients, organizations such as the IWMF and many other patient organizations produce up-to-date, relevant booklets and information so that people can refer to that and refer their physicians to that as well. I think that is a way of having a top-down and bottom-up approach to educating. And of course, one has to keep that up to date. We need contemporaneous knowledge to be getting out there. You can't sit on your hands, because things change very quickly, which is good.

What emerging research or clinical strategies are you most optimistic about in improving outcomes for individuals with this disease?

My approach to WM and medicine in general is quite holistic. I think in order to make scientific developments, of course, we have to be reductionist; we have to look more closely at small things and make sense of them. But in the clinic, when you care for a patient, as I mentioned, patients come as a whole being. They have WM and perhaps other conditions. So, in my mind, developments come both from individual scientific achievements, of which there are many and that is very exciting, but also from the delivery. The best way to deliver existing therapies is very important, because if we simply keep our eye on the future, the present is somewhat neglected, and I think that's not a good thing. So, I think we need to be very holistic about it.

For me, it's about having a common language for diagnostic and response criteria, understanding factors that influence prognosis, as well as good treatment and diagnostic algorithms for clinicians to use. This way, there will be thorough workups of patients, a clear understanding of when and why to start treatment, and also bringing in treatments at the right time, giving them a chance to work. Sometimes people get quite worried if they don't see an immediate change in the IgM, for example. So, it's about giving treatments a chance to do their job, not abandoning them too quickly, but at the same time minimizing the risk of toxicity. Dose modulation is crucial; one size does not fit all by any stretch of the imagination.

And of course, bringing in new therapies is something that's been very actively worked on throughout the world. I recently was involved in some grant applications to the IWMF, and it was really exciting to see not just imaginative but innovative, groundbreaking work happening for WM, a small disease, by so many groups across the globe. I think that is absolutely amazing. It all feeds together to produce improvements. You can't do anything in isolation; you have to put it all together. Each piece of emerging research has a role to play in the big picture.

I'm very hopeful about the entire thing, and I think different people bring different things to the table for the advancement of WM. I'm also very encouraged by the voice that WM patients have and the number of groups out there who make their voice heard. This helps to empower patients because, as I said, patients need to be advocates for themselves. They need to be a partner in the whole treatment process, not just a passive recipient. So, that's my view.

Transcript has been edited for clarity and conciseness.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.