SIOG 2015

How can we evaluate and improve quality of life?

Prof Reinhard Stauder - Innsbruck Medical University, Innsbruck, Austria

Doctors can often be particularly interested in progression free survival, overall survival, why is quality of life so important in your view?

Because it includes the patient’s perspective. This is something which has become more relevant nowadays, to include not only the physician’s position but also the side of the patient which means we are moving from a more paternalistic decision-making to a decision-making where the patient is involved.

Could you give me the details of what you did in this registry study that you’re reporting now?

Yes, this is a huge registry which was initiated by the European LeukemiaNet. Actually there are seventeen countries from Europe which are participating; there are more than a hundred centres involved. The goal of this registry is to register low risk IPSS, low risk MDS, patients within three months of initial diagnosis. Primary myelodysplastic syndromes are included and the goal is to document demographic data, clinical outcome, treatment in daily life in Europe. It’s certainly the largest and highest quality registry in the world.

How did you look at quality of life with these patients?

Within the registry there are several scores or parameters which are applied which include performance state, which includes comorbidities, and then the essential point is to assess quality of life. Quality of life is assessed by the so-called EQ-5D which is the European Quality of Life instrument 5 dimensions, this is how this acronym is explained. It’s a simple and robust score which includes five questions and one visual analogue scale.

Those questions, are they directed to the patient?

Yes.

So these are patient-reported outcomes?

Yes, these are patient-reported outcomes and an important point is that we evaluate quality of life at initial diagnosis and every six months which means we have a median observation time which is now around four years so we have a lot of patients where we have more than ten or even fifteen follow-ups.

Could you give me the details of what you discovered then?

We discovered that quality of life is restricted in a relevant proportion of patients. EQ-5D is measured in five dimensions which are usual activities, which are mobility, which are functional activities, which are pain and discomfort and which are anxiety and depression. We see in mobility restrictions in about 13% of all patients and for the other dimensions we have restrictions in 40-50% which is a huge number.

Can you tell me about the factors that were influencing those that came out of your research?

We realised that age impacts quality of life which means the older you are the lower is your quality of life. This is differential for the distinct dimensions which means, for example, with anxiety, depression or pain you have an increase around the age of 50 and then it levels off. You have other dimensions where you have a kind of linear increase, for example for mobility it’s a kind of linear increase. Secondly, we found that there is a strong impact of gender which means women in general have a lower quality of life, a lower perception of their quality of life. Quality of life is associated with comorbidities, it is associated with performance state and, what is quite important, haemoglobin levels impact quality of life largely and transfusion need.

What about polypharmacy?

Polypharmacy too is quite a strong predictor of quality of life.

Of course it’s part of the comorbidity angle too?

Yes.

So what do you think doctors should be doing about this?

These findings are certainly relevant because it’s a kind of structured evaluation in a very well defined large cohort because actually we have more than 1,500 patients who filled out the form, so that’s a huge number. We have a well-defined cohort which means we are laying the ground, we are laying the basis for the analysis of prevalence of reduced quality of life.

For doctors, what are the messages that you would like to give out at this point about taking notice of patient-reported outcomes and quality of life in myelodysplastic syndrome?

An important point is certainly that a huge amount of patients have reduced quality of life so doctors should be aware of that fact. Secondly, we are trying to figure out which factors might be influenced to improve quality of life because age and sex cannot be influenced but we could try to improve haemoglobin levels, we could try to reduce transfusion need, that might result in an improvement in quality of life. We should try to integrate quality of life in combined outcomes which means overall survival, progression free survival and, in addition, quality of life.