17th Congress of EHA, Amsterdam, 14-17 June 2012

Patient and doctor communication and quality of life guidelines

Jan Geissler – CML Advocates Network

Jan, patient advocacy in haematological malignancy treatment is, according to you, very important because you’ve just come from a session here in Amsterdam which involved patient advocacy. Why is this such an important issue?

I think it is crucial that the patient relevant topics are being addressed to physicians and clinicians that are day to day caring for patients but quite often they don’t see what is the most important thing for the community as a whole, for the patient community. And that is why EHA three years ago has established a patient advocacy session within the scientific program which addresses clinicians and physicians but where we, as patients, set the topics which we find of most importance.

You were talking today about quality of life and the way doctors perceive this and the way patients perceive it. What did you do at the session?

Well it was a very exciting session really because we had three different perspectives. The first perspective was from a patient advocate who actually with his pan-European organisation has done a study assessing the different perception of nurses, patients and doctors on certain issues in myeloma. So it was focused on myeloma but still we could see huge differences how much certain symptoms of the disease or the treatment impact the life of myeloma patients, for example neuropathy or other issues were very relevant and very different and I think that just shows there is a gap of communication where we talk about what patients perceive and what doctors perceive in terms of quality of life impact.

Did you see some raised eyebrows from the doctors?

Well of course it always, I think, encourages people to think, “Is that what I hear, really what patients are telling me or are there reasons why patients are not telling me?” So for example one issue that the study brought up is sexual issues; patients are embarrassed to talk to their doctor about it but it is still impacting their quality of life heavily or neuropathy is a different example where there is a very different perspective. So I think it opened the eyes of some and we also had questions afterwards from the audience about myeloma which just has shown that it brought people to think about that.

And one of the speakers gave guidelines on quality of life. What came out of that?

There’s a working group of the EHA, a Scientific Working Group, on quality of life and symptoms and they have been working very hard over the past months to publish a guideline for haematologists how to assess quality of life, and they have just published a handbook on that and are distributing it now, and I think it’s a very valuable resource.

What sorts of things does it say?

Well it basically says what the criteria are that we’d need to look at. I mean I am not a haematologist, I am a patient advocate so I haven’t looked in detail at what the guideline says but it basically provides guidelines on how doctors should address and assess and probably when they do questionnaires and so on what are the topics they should include in such a quality of life questionnaire, for example.

But I can see that you’re fired with enthusiasm having attended this session which is at an academic conference here for doctors. What would you say to doctors coming out of this patient advocacy session on quality of life that they should take home from this?

Well I think it is very important that they collaborate with patient groups about the issue of quality of life because quality of life not only is important for care but it is also important for access to medicines because more and more the reimbursement of medicines is, let’s say, dependent on the value that is being assessed and value is not only survival, value is also quality of life. And patient groups have a much better insight and they might say that this therapy might not extend life but it changes the life from something which is miserable to something very worthwhile, and I think the patient groups are the perfect experts for providing input into this.

Jan, thank you very much.

You are welcome.