A study to develop a quality of life questionnaire for people with blood cancer

Cancer type:

Acute leukaemia
Acute lymphoblastic leukaemia (ALL)
Acute myeloid leukaemia (AML)
Blood cancers
Chronic leukaemia
Chronic lymphocytic leukaemia (CLL)
Chronic myeloid leukaemia (CML)
High grade lymphoma
Leukaemia
Low grade lymphoma
Lymphoma
Myelodysplastic syndrome (MDS)
Non-Hodgkin lymphoma

Status:

Open

Phase:

Other

This study is for people with a blood cancer such as myeloma, lymphoma or leukaemia. 

More about this trial

Having a haematological malignancy Open a glossary item (blood cancer) can cause symptoms. For example, you may feel weak, tired or have high temperatures. You might have a lot of treatment for your cancer which can cause side effects. Having these symptoms and side effects can affect your quality of life Open a glossary item

In this study, the researchers want to find the best way of measuring this.

The aims of this study are to 

  • find out how symptoms and treatment affect quality of life
  • create a new quality of life questionnaire for people with blood cancer

You will not get any direct benefit from taking part in this study. It is unlikely to change your treatment plan in any way. But the researchers hope it will help to develop a better quality of life questionnaire in the future.

Who can enter

You may be able to join this study if all of the following apply. You

  • Have cancer of the blood and you are having treatment at the hospital
  • Speak and read English well
  • Are at least 18 years old

Trial design

This study is in 2 parts. 

  • part 1 is the interview stage. The study team need about 100 people to join. 
  • part 2 is testing the questionnaire the study team develop based on the interviews. The team need over 400 people to join this part.

Part 1
You have an interview. This takes about half an hour. Each session will be audio recorded. The interviewer will ask you 

  • your age
  • your gender
  • about your work
  • the type of blood cancer you have
  • about symptoms and treatments you have had

The interviewer will talk to you in detail about the impact your cancer has had on your quality of life

Part 2
The study team use the information collected in part 1 to develop the new questionnaire. They will test it in various stages to perfect it. So for example to begin with the team need around 60 people to give feedback about the questionnaire 

  • layout
  • content
  • how easy it is to do
  • how relevant the questions are
  • whether there are any areas not included which are important

The study team continue to revise and improve the questionnaire with different groups of people. At the end of part 2 they need around 180 people to test the final version.

Hospital visits

You have 1 extra visit to hospital to take part in the interview.

Side effects

There are no side effects from taking part in this study. You may find it uncomfortable to talk issues relating to your cancer. If you do become upset, you can stop the sessions at any time.

Location

Cardiff
Guildford
Leeds
London
Oxford
Swansea

Recruitment start:

Recruitment end:

How to join a clinical trial

Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Professor Sam Salek

Supported by

Experimental Cancer Medicine Centre (ECMC)
European Hematology Association Scientific Working Group
NIHR Clinical Research Network: Cancer

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

13456

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Around 1 in 5 people take part in clinical trials

3 phases of trials

Around 1 in 5 people diagnosed with cancer in the UK take part in a clinical trial.

Last reviewed:

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