“I think it’s really important that people keep signing up to these type of trials to push research forward.”
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.
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’
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
- Breast cancer
- Bowel cancer
- Prostate cancer
- Bladder cancer
- Cervical cancer
- Womb (endometrial) cancer
- Head and neck cancer
- Lung cancer
- Testicular cancer
- A type of brain tumour called a glioma
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
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.
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.
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.
How to join a clinical trial
Ms Teresa Young
East and North Hertfordshire NHS Trust
EORTC Quality of life Group
NIHR Clinical Research Network: Cancer