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

Cancer type:

Blood cancers

Myelodysplastic syndrome (MDS)

Status:

Results

Phase:

Other

This study was done to find out more about the quality of life for people with a group of bone marrow disorders called myelodysplastic syndromes.

The bone marrow Open a glossary item is the body’s blood cell factory. In myelodysplastic syndromes (MDS) the bone marrow does not produce enough blood cells . This can lead to problems such as a drop in the number of red blood cells (anaemia ), bleeding or infections. Sometimes, MDS can develop into leukaemia Open a glossary item . 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. In this study, researchers wanted to find out more about how people with MDS feel both about their symptoms and the side effects of any treatment they have.

They asked people who took part to fill out some questionnaires. They hoped that understanding more about quality of life Open a glossary item for people with MDS will help to improve ways of managing symptoms and treatment side effects in the future.

Summary of results

The study team found that tiredness (fatigue) was a big problem for people with MDS and affected their quality of life. They also found that given the choice, some people wanted to be involved in their treatment plan and some didn’t. But most people preferred their doctor to make treatment decisions.

280 people took part in the study. They had all been recently diagnosed high risk MDS. Everybody filled out a quality of life questionnaire and a questionnaire that asked how involved they wanted to be in their treatment plan. The study team also collected information on whether people asked their doctor how long they were likely to live for (their prognosis).

The researchers looked at the results of the quality of life questionnaires. They found that the biggest problems people had were

Tiredness (fatigue)
Shortness of breath
Pain

They found that women had more problems with tiredness than men. And that people with higher levels of tiredness were more likely to have other symptoms such as shortness of breath or loss of appetite.

The researchers also looked at the results of the questionnaires that asked about treatment planning. They found that

Half of the people preferred the doctor to make treatment decisions
About 4 out of 10 people (40%) wanted to share treatment decisions with their doctor
About 1 out of 10 (10%) people wanted to make their own treatment decisions
About 6 out of 10 (60%) people wanted to know their prognosis (younger and better educated people were more likely to ask about this)
People with a poorer quality of life were less likely to want to be involved in treatment decisions.

The researchers concluded that fatigue was a big problem for people with MDS. They also found that wanting to be involved in treatment planning varied in this group of people.

We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item ) and published in a medical journal. The figures we quote above were provided by the trial team. We have not analysed the data ourselves.