A study looking at quality of life of people with multiple myeloma

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.

Stage 1
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:

• anxiety
• depression
• pain
• tiredness (fatigue)
• sexuality  

Stage 2
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.

Stage 3
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 (peer reviewed ) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.