A study to develop a quality of life questionnaire for people who have chronic lymphocytic leukaemia, Hodgkin lymphoma or non Hodgkin lymphoma

Please note - this trial is no longer recruiting patients. We hope to add results when they are available.

Cancer type:

Blood cancers
Chronic leukaemia
Chronic lymphocytic leukaemia (CLL)
Hodgkin lymphoma
Non-Hodgkin lymphoma




Phase 1

This study is using 2 questionnaires to work out the issues most important to people with chronic lymphocytic leukaemia (CLL), Hodgkin lymphoma or non Hodgkin lymphoma (NHL). This is to help doctors develop a quality of life questionnaire to support people with these cancers.

If you have cancer, the changes in your body due to the disease and treatment might have an impact on your personal wellbeing. Your doctor needs to know about any problems you may be having, and will ask you about how you have been feeling. To help you talk about any problems, you may fill out a questionnaire asking you about your quality of life Open a glossary item.

The European Organisation for Research and Treatment of Cancer (EORTC) has designed some questionnaires for people with cancer. Your specialist team may ask you to complete the EORTC general questionnaire, for anyone who has cancer. And, a questionnaire to go with this that asks you about your particular cancer. But at the moment, there isn’t one for people who have CLL, Hodgkin lymphoma or NHL. So the EORTC is running this study to help it develop one to use alongside the general questionnaire.

Researchers will talk to people with these cancers to find out more about how they feel, both physically and emotionally. They will use the answers to develop a questionnaire, and then test this in a large group of people.

The main aim of this study is to develop a questionnaire to help assess quality of life and symptoms in people with CLL, NHL or Hodgkin lymphoma. You will not have any direct benefit from taking part in this study, but the results will be used to help people in the future.

Who can enter

You may be able to enter this study if you

You cannot enter this study if you

  • Have had any other type of cancer in the last 5 years
  • Have any condition that may affect your mental health or understanding, making it difficult for you to complete the study questionnaires
  • Are taking part in similar quality of life studies, and the study team think this might affect answers you give

Trial design

Everyone will fill out two questionnaires with a researcher. You will read and complete the EORTC general quality of life cancer questionnaire, and talk about any issues you think it doesn’t cover. The researcher will also talk to you about your experiences from when you were diagnosed, through your treatment to your time after treatment. They will ask you which 10 issues are most important to you in relation to your cancer and quality of life.

The research team will also talk to health professionals, to ask what they think of the questionnaire and what issues they feel are important for those they care for.

The team will treat all information you give them confidentially Open a glossary item, so no one will be able to link it to you.

Later in the study the research team will use the answers from both patients and staff to develop their questionnaire for people with CLL, Hodgkin lymphoma or NHL. They will then test the questionnaire they have developed in a new set of people with these cancers.

Hospital visits

You will complete your questionnaires when you come to the hospital for a routine appointment. So there are no extra hospital visits as part of this study.

Side effects

You will not have any side effects as a result of taking part in this study. But you may find talking about some of the issues upsetting. The team will be able to offer you support if this happens.

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

Dr Kyriakou

Supported by

European Organisation for Research and Treatment of Cancer (EORTC)
National Institute for Health Research Cancer Research Network (NCRN)
London North West Healthcare NHS Trust 

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:


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

Cara took part in a clinical trial

A picture of Cara

"I am glad that taking part in a trial might help others on their own cancer journey.”

Last reviewed:

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