A study to find out how people with advanced myeloma cope with symptoms and treatment

Please note this trial is no longer recruiting patients.

This study is looking at how people cope with the effects of myeloma and treatment to see if their health care teams can do more to help.

Myeloma symptoms include bone pain, tiredness, sickness and shortness of breath. This can affect people’s quality of life. Doctors can control symptoms with treatment. But sometimes treatments have side effects that may cause further problems in the long term. Doctors don’t want to give treatments that do more harm than good.

The aims of this study are to find out

How people cope physically and psychologically with advanced myeloma
How satisfied people feel with their care and if there are any unmet care needs
More about side effects of myeloma symptom treatment

The researchers will collect information to see if they can improve quality of life for people with advanced myeloma in the future.

Please note, you cannot volunteer for this study. A member of your care team may ask if you would like to join the study.

Recruitment

Start 22/05/2008

End 31/10/2010

Phase

Other

Who can enter

You can enter this trial if you

Have myeloma that is causing symptoms
Have had myeloma treatment in the past including chemotherapy and at least one bone marrow or stem cell transplant
Are over 16 years old

You cannot enter this trial if

You have not yet had treatment for advanced myeloma
Your myeloma is not well controlled with treatment
You are currently having treatment unless it is ‘maintenance treatment’ - you can check this with your doctor

Trial design

This study will recruit 50 people. The researchers will send you a letter inviting you to take part. A member of the research team will see you at your next routine hospital appointment to ask if you are willing to take part in the study or not.

If you agree, they will arrange an appointment at the hospital on a day that suits you. You will have some tests and complete a questionnaire. The questionnaire will ask you about

Employment
How you have been feeling
Pain
The care you had after treatment and your care needs
Sexual activity (you do not have to answer this section if you don’t want to)

Such questionnaires are often called quality of life questionnaires. The whole questionnaire will take about an hour to complete.

The research team may also ask you to take part in a taped interview. This will look in detail at how you cope with your myeloma; how it affects your everyday life and what you think about the care you are given.

Hospital visits

You will go to the hospital and see your study doctor who will examine you and arrange some tests. The tests include

Blood and urine tests
Heart trace (ECG)
Heart ultrasound (echocardiogram)
Lung function tests
Bone density scan (DEXA scan)

If you aren’t able to have all the tests on the same day, you may have to go to the hospital for 1 or 2 further visits.

Side effects

As there are no treatments in this study, there are no side effects. You may find it upsetting to talk about your experiences of myeloma. If this happens, the researcher will talk through your feelings with you. They will refer you for further support and care if you agree.