Dr. Christopher Dalley & Dr. Timothy Chevassut – Haematologists at Brighton and Sussex University Hospitals Trust and Royal Sussex Hospital NHS Trust - give an account of how they discuss diagnosis and treatment with their MDS patients. Watch the video and read the transcript below.

What are the typical issues when you first diagnose a patient with MDS and when may you tell patients about the existence of a support group?

I think it's really difficult sometimes for patients to understand what goes on in the blood. So, for me, it's really important to try to give an appropriate explanation about what myelodysplasia is and the symptoms they may have. Of course, because it is a significant blood disorder with lots of anxiety, you want to be able to support the patient when you give the diagnosis and try to allay any anxieties that they may have.

In terms of the diagnosis and explaining the diagnosis, there's lots of written information available, so it's very important for patients to access that (and I often give that to patients at first diagnosis or subsequent visits) and also to be able to access support from the MDS Patients Forum. So normally I give that information at the time of diagnosis, and a clinical nurse specialist who I work closely with will also reiterate that to patients.

And how have you seen the Patient Support Group activities and materials help specific patients?

Well, a lot of patients have questions and I think, in this day and age, most patients want to have information that they can access and it's not always the case that you can access that information in the clinic or have all the questions answered in the clinic, to be honest. So I find that if they have additional support they can access that information, talk to other patients and experts and to other family members from across the UK. I think that's really important and a great help for patients and families.

Tim, how frequently do you discuss clinical trials with your MDS patients and have you heard of any trials today that sound interesting or promising?

We discuss clinical trials as and when it's appropriate to do so. Obviously, we have established treatments by way of Azacitidine for patients newly diagnosed with high-risk myelodysplasia but, of course, not all patients respond to those treatments. Some will progress to leukaemia, others won't have an adequate response in terms of their blood count. So there are many occasions when we have to look at alternative treatments for these patients and that really would be the occasion for bringing up clinical trial opportunities both within Brighton and elsewhere, for instance at Kings or elsewhere in London.

And what kind of difficulties do you encounter with explaining the concept of trials to patients? Have you got an example of a really successful trial for a patient?

I think the concept of clinical trials and the problems perhaps we encounter when we discuss these with patients are conveying the sort of complexity of the study in simple terms that they're able to get their head round. These are often very complicated trials with a lot of patient information with them. But, in essence, the question that all clinical trials are trying to answer is whether new treatments that are becoming available for us are better than standard treatment. For most of the patients who fail Azacitidine, there really isn't any "Plan B", so we are very keen to try and understand where these newer therapies will fit in future treatment for our patients.

You asked about clinical trials that we have ongoing in Brighton at the moment: we're looking at antibody-based therapies, at targeted therapies; we're looking at Immune Checkpoint Inhibitor therapy which is very promising in the solid tumour field, but not yet established in blood cancers; we're looking at antisense therapy, hopefully next year, in patients who have refractory anaemia or anaemia that's no longer responding to Erythropoietin, for instance.

So we have some interesting trials locally and obviously many others elsewhere in the country. The important thing is giving patients the opportunity to take part in these studies and make these studies available to them.

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