Sophie Wintrich, Chief Executive of the MDS UK Patient Support Group, interviewed Prof. David Bowen – Consultant Haematologist at St James University Hospital, Leeds. Watch the video and read the excerpts below.

What are the typical issues when you first diagnose a patient with MDS?

What difference does it make to you personally - in your daily consultations – to have a well-informed or empowered patient? Benefits/drawbacks?

"If the patient has some idea about what MDS is and they come with a set of questions from their own readings, that is a useful framework to find the details that are specific to them.
I usually use the MDS Patients Support Booklet... I mark the booklet and the sections that are relevant to them..." Prof. David Bowen

How important is it to have a treatment plan for MDS? Why?

What kind of difficulties do you encounter with explaining the concept of trials to patients? Do you have examples of a successful trial for a patient?

Clinical trials and the European MDS Registry Trial

Question: How frequently do you discuss clinical trials with your MDS patients? Are there any current trials that you are discussing at the moment?

Prof. Bowen: We are a major centre for MDS research, so we are very focused on clinical trials here in Leeds. Most of our patients are suitable for at least the Registry Trial. The Registry is essentially an opportunity to collect information about every patient's type of MDS and to use that information going forward, document that information about how that patient's MDS develops and what sort of treatment they have and what their response is to treatment.
That is a trial, a Registry Trial, very important to generate data that we call "real world data" or "community data" to record information about patients who are not in clinical trials for new drugs, but are nevertheless managed using conventional treatments.

How frequently do you discuss clinical trials with your MDS patients? Any trials discussed today that sound interesting or promising?

How do you address and explore quality of life issues with patients and their families?

What are your views on patients who request an additional opinion? How do you generally react? Does it offend you?

What is the difference for patients between being discussed in an MDT – and going for a 2nd or additional opinion somewhere else?

Where are we at in terms of more personalised treatment for MDS?

Should we start to insist that all MDS patients must have a genetic mutation test to establish what treatments may work out best for them?

What would be the research benefit of collecting tissue samples from all MDS patients? How can patients ensure this happens?

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