"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study looking at quality of life of people with multiple myeloma
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This study developed and tested a new questionnaire for people with multiple myeloma to find out more about their quality of life.
More about this trial
We know from previous research that having treatment and living with cancer can affect people’s quality of life. But only a small amount of this research has been with people who have multiple myeloma.
In this study, the researchers wanted to:
- understand what issues matter most to the quality of life of people diagnosed with multiple myeloma
- develop a questionnaire to help doctors assess the quality of life of people with multiple myeloma that can be used in routine clinical care
Summary of results
The researchers were able to develop a questionnaire that was accurate in assessing the quality of life of people with myeloma.
There were 3 stages to this study.
In the first stage, 51 people with myeloma were interviewed either individually or as part of a focus group.
The researchers asked what issues people thought were most important to their quality of life. The things most fundamental to quality of life appeared to be:
- emotional issues (such as low mood, anger and frustration)
- physical activity and being able to participate in things (such as mobility, leisure and hobbies, sexuality)
- support issues (such as having good clinical care, housing, and financial support)
The researchers also asked 6 health care professionals to identify issues that can affect people’s quality of life the most and are important for them to know about when providing care. These were:
- tiredness (fatigue)
In the second stage, researchers used the results from the interviews to develop a questionnaire to assess quality of life that would be suitable for use alongside clinical care.
They tested the new questionnaire in a small group of 12 people with myeloma to find out what they thought about the questions. They then made some final changes to make the wording of the questions easier to understand.
In the third stage, the researchers tested the new questionnaire in a larger group of 380 people, from different hospitals around England.
The researchers found the new questionnaire was accurate and acceptable in learning about the quality of life for people with myeloma.
In future, the researchers want to confirm this by doing another study over a longer period of time and giving the questionnaire to more people staying in hospital.
As part of this study, the researchers have also looked at the quality of life of people with follicular lymphoma. They hope to publish these results soon.
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Professor Irene Higginson
King’s College Hospital NHS Trust
NIHR Clinical Research Network: Cancer
St Christopher’s Hospice