A study looking at developing specific quality of life questionnaires for people with cancer

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

Cancer type:

Bladder cancer
Blood cancers
Bowel (colorectal) cancer
Brain (and spinal cord) tumours
Breast cancer
Cervical cancer
Head and neck cancers
Lung cancer
Lymphoma
Melanoma
Prostate cancer
Skin cancer
Testicular cancer
Womb (uterine or endometrial) cancer

Status:

Closed

Phase:

Other

This study is looking at developing quality of life questionnaires for people with specific types of cancer, or for specific issues related to their cancer.

More about this trial

During cancer treatment, it is important to assess peoples’ quality of life Open a glossary item. A core questionnaire containing 30 questions relevant to everybody diagnosed with cancer was developed in the 1990s by the European Organisation for Research into Cancer (EORTC). It is widely used in the UK and other countries. This is called the EORTC QLQ-C30.

Researchers want to develop additional questionnaires that are more specific to

  • Individual types of cancer
  • Different aspects of care
  • Certain groups of patients, such as the elderly
  • Particular issues that may affect people with cancer

They call these additional questionnaires modules.

The aim of this study is to look at the process for developing specific modules to assess quality of life for people with cancer. The researchers are currently developing a module looking at the issues people face after finishing cancer treatment (survivorship).

Who can enter

You may be able to join this study if you

Are at least 18 years old and have been diagnosed with one of the following cancers

And the following apply

  • You have finished treatment (apart from certain types of maintenance treatment such as hormonal therapy for breast cancer)
  • You no longer have any signs of cancer

You cannot join this study if you

  • Can’t speak or read English
  • Are taking part in other quality of life studies that could interfere with this study
  • Have been diagnosed with a mental health problem or problems with concentration, thinking or memory (cognitive impairment) that could stop you filling in questionnaires

Trial design

The study is in 3 parts. The researchers hope that 150 people will join the study in the UK.

In part 1, the researchers will develop a list of potential new issues relating to survivorship. They will then interview people who have had cancer to see what they think of this list of issues.

The study team will ask the people taking part to complete the QLQ-C30, and to comment on the list of new issues. They would like people to say which ones are most important and to tell them any other issues that they think are missing from the list. The researchers will also talk to health care professionals.

In part 2, the researchers will use the information gathered to develop a new, specific module.

In part 3, the researchers will ask patients to complete the new module and say what they think of it. They will ask people if there are any issues which were difficult, annoying, confusing, upsetting or intrusive. They will also ask if there is anything that doesn’t seem relevant, or if there are any important issues missing. They study team will then amend the questionnaire, incorporating peoples’ views.

If you take part in the study, the researchers will collect some background information about you such as your age, gender and marital status. They will also ask your permission to look at your medical notes.

Hospital visits

You complete the questionnaires and have the interview with the researcher at the hospital. It will take 20 to 40 minutes and will be at a time that is convenient for you.

Side effects

Some people may find it upsetting to think about some of the issues in the questionnaire. If this happens, the researcher can arrange for somebody not involved with the study to talk to you.

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

Ms Teresa Young

Supported by

East and North Hertfordshire NHS Trust
EORTC Quality of life Group
NIHR Clinical Research Network: Cancer

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

12351

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

Charlie took part in a trial to try new treatments

A picture of Charlie

“I think it’s really important that people keep signing up to these type of trials to push research forward.”

Last reviewed:

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