A study to understand more about quality of life in people with myelodysplastic syndromes

This study is looking to learn more about the quality of life of people with a group of bone marrow disorders called myelodysplastic syndromes (MDS).

The bone marrow is the body’s blood cell factory. In MDS the bone marrow does not produce enough blood cells. This can lead to problems such as anaemia, bleeding or infections. Sometimes, MDS can develop into leukaemia. But the risk of this happening is different for each person.

It is possible that the symptoms of MDS, and treatments to try to improve these symptoms, may have a negative impact on how you feel. Researchers in this study would like to find out more about how people with MDS feel, both physically and emotionally, about their symptoms and side effects of any treatment they have. They will ask people who take part to fill out a series of questionnaires. They hope that understanding more about quality of life for people with MDS will help them in future to improve treatment plans to better manage symptoms and treatment side effects.

You will not have any direct benefit from taking part in this study, and it is unlikely to change your treatment plan in any way. But the results of the study will be used to help people with MDS in the future.

Recruitment

Start 05/11/2009

End 30/09/2014

Phase

Other

Who can enter

You may be able to enter this study if you

Have been diagnosed with myelodysplastic syndrome in the last 6 months, and your MDS is moderate to high risk of turning into leukaemia OR your risk has increased to this now after any treatment except a transplant
Are able to read and understand English
Are at least 18 years old

You cannot enter if you

Had been told that your MDS was moderate to high risk of turning into leukaemia when you were diagnosed, but you have since had treatment for this - if you only had drips containing blood cells (transfusions) you can still take part
Have MDS as a result of cancer treatment (secondary MDS)
Have had any other cancer including leukaemia – if you have had basal cell skin cancer you can still take part
Have any mental health condition that is a cause for concern
Have any condition that may affect how clearly you understand things (cognitive dysfunction)

Trial design

This study will recruit 265 people. The study team will ask everyone to fill out a set of questionnaires

Before you start treatment
1 month after you start treatment
2 months after you start treatment

The questionnaires will include questions on

How you feel in yourself
How well you feel able to relate to other people
How you feel physically
Any symptoms you have had because of your MDS or treatment, for example severe tiredness (fatigue)

These questionnaires are called quality of life studies, and should take about 15 minutes to complete.