2010 American Society of Hematology Annual Meeting 3rd - 7th December
Interview with Dr Reinhard Stauder - Innsbruck Medical University, Innsbruck, Austria
The importance of myelodysplastic syndrome diagnosis
RE Reinhardt Stauder
IV I have Reinhardt Stauder from Austria. Reinhardt, why are you so keen to take a big interest in MDS?
RE Because myelodysplastic syndromes are quite relevant, they are quite relevant for elderly. They put a lot of impact on the quality of life. There are two main points which have to be considered, these are the cytopenias, and the risk of transformation to myeloid leukemia.
IV How big is the problem that MDS is really under diagnosed and perhaps not diagnosed in many patients?
RE We have a lot of elderly who suffer from anemia, which means in Austria 12% or 13% of the elderly suffer from anemia which is a large amount, 250,000 out of 8 million inhabitants. And a relevant proportion of those certainly suffer from myelodysplastic syndromes, which are not diagnosed. So it’s a big challenge for our health care systems.
IV What is the risk of progression to acute myeloid leukemia? How many patients progress?
RE That’s about 30%.
IV So what should doctors be doing about MDS that they’re not doing at the moment?
RE They should make, or they should be aware of the fact, that anemia in the elderly is relevant, which means anemia causes increased morbidity, increased mortality and increased hospital stays. So anemia in the elderly is not physiological but you should try to make an appropriate diagnosis and to treat the patient.
IV Now you made a big registry study of MDS, I want to ask you about that. But could you summarise for us just how beneficial it is to treat the disease?
RE It is beneficial because you can treat the symptoms. So the symptoms are getting better.
IV So patients can have a better quality of life which impinges exactly on the paper that you’re presenting here at the American Society of Hematology meeting. You’ve been looking at health related quality of life, can you tell me about this study, what is it and what were you doing?
RE It’s a big European project which was initiated by the European leukemia-net and it’s a registry of myelodysplastic syndrome at diagnosis. And we make follow up to see how is the quality of life, how are the core morbidities, how is the outcome. So, certainly one of the biggest projects in myelodysplastic syndrome world wide.
IV So how many patients are on this registry so far?
RE Actually we are approaching 1,000 patients, and we want to carry on until 2,000.
IV And you’ve got particular ways of measuring quality of life, which is the big thing, isn’t it?
RE Yes, we are applying scores to assess those persons in a comprehensive way. Quality of life is one of those dimensions we are measuring. We are analysing it by the EQ5D, and we see a relevant proportion of MDS patients who suffer from reduced quality of life.
IV So it’s the EQ5D descriptive system that assesses the factors that are important.
RE Yes. EQ5D stands for European Quality of Life Five Dimensions.
IV So what have you found so far?
RE We have seen that a large proportion of MDS patients suffer from reduced quality of life. In detail we have observed that quality of life decreases with increasing age. And we have observed that there are differences in sex, and that there might be also differences based on cultural background, that they are different between the different countries. The important point is that we want to compare the quality of life now with standard populations from the different countries, to see what is the impact of MDS on the quality of life. So we have to compare it with a sex and age matched population.
IV So quality of life related to age is not so surprising, but the sex is perhaps surprising. What are the reasons for the gender difference?
RE There are several reasons. There are certainly differences in the perception, which means men and women in a given situation have a different perception. Then there are of course differences in education. For example men in most western societies never have learnt how to cook, or how to prepare meals, or how to wash. And that results in differences in activities of daily life for example. So I mean there are gender differences, there are differences between men and women, and these differences are seen also in quality of life in MDS patients.
IV So for doctors generally, and of course cancer doctors, what are the clinical implications of your findings from this very detailed registry?
RE We will be able to give information how myelodysplastic syndromes really impact the quality of life in patients. So we are making follow ups at different time points, to see how the progression of the disease parallels reductions in the quality of life. So we will get a lot of information about the real impact of MDS on MDS patients.
IV The evidence then, on balance, you’re saying, is that if you recognize what’s happening then you can intervene and do something about it.
RE Yes, right, right. And you can use it at the outcome parameter, which means do your therapeutic interventions result in an improvement, which might be perfect.
IV Very good starting point for improving the whole situation. What about the other part of the iceberg? You’ve got the bit of the iceberg that’s visible, those who are diagnosed, but there’s a whole lot of patients that are not diagnosed. And this whole question of anemia in the ageing population, have you been able to come up with any ideas about how to tackle that? The fact that some of it may be myelodysplasia, but may not?
RE I mean we have to educate physicians, and we have to start initiatives which address the aspect of anemia in the elderly. We have to teach colleagues that anemia in the elderly is not physiological, and that we have to find out the reasons for anemia. Because 30% are caused by nutritional deficiencies like iron deficiency or B12 deficiency, and those patients can be treated effectively with low costs and with very high success.
IV So compiling this sort of detailed information gives you quite a holistic approach to the health care of this population.
RE You’re right.
IV So what are the one or two things you’d like doctors to remember from this whole issue and the study that you’ve done here?
RE They should remember that anemia in the elderly is not physiological, that you should try and make a proper diagnosis. And concerning myelodysplastic syndromes they should be aware of the fact that even low risk myelodysplastic syndrome at diagnosis put a lot of burden on the quality of life in MDS patients.
IV Well Reinhardt, thank you very much for joining us here on ecancerTV and I wish you an enjoyable rest of the American Society of Hematology meeting.
RE Thank you.