A study looking at developing a quality of life questionnaire for anal cancer

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Cancer type:

Anal cancer

Status:

Results

Phase:

Other

This study was done to develop a quality of life questionnaire specifically for people with anal cancer.

More about this trial

It is important to find out how the symptoms of cancer and side effects of treatment affect people’s quality of life.  To do this, doctors ask people to fill in quality of life questionnaires.

When this study was done there wasn’t a quality of life questionnaire specifically for people with anal cancer. So they had to use a general questionnaire for people with cancer. But researchers wanted to develop a more specific one.

In this study the research team spoke to people with anal cancer and health care professionals. They wanted to find out what the most important issues were.

The aim of this study was to develop a quality of life questionnaire specifically for people with anal cancer.

Summary of results

The research team were able to develop a new quality of life questionnaire specifically for people with anal cancer.

Results
This study recruited a total of 153 people who’d had chemotherapy and radiotherapy (chemoradiation) for anal cancer. They also involved 34 health care professionals.

First, the research team spoke to 43 patients and looked at 152 published journal articles to find out what issues are important to people with anal cancer. They made a list of 197 different issues, and grouped them into 19 categories. This included things such as bowel function, pain or discomfort, anal bleeding and skin issues.

A group of 10 patients and 34 health care professionals then reviewed 134 of these issues. They gave each issue a score, depending on how important they thought it was. The 65 issues that scored highest were then reviewed by another group of 100 patients.

The research team grouped some issues together and removed some that were more general. They were left with 27 questions they could use to assess the quality of life of people with anal cancer. They called it the QLQ-ANL27. The questionnaire is now being looked at by a larger group of patients from a number of different countries.

Conclusion
The research team were able to develop a quality of life questionnaire specifically for people with anal cancer. This is now available in 8 languages from the European Organisation for Research and Treatment of Cancer (EORTC) for health care professionals to use. They can use it for people taking part in a clinical trial, or having standard treatment.

We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.

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 Colin Johnson

Supported by

European Organisation for Research and Treatment of Cancer (EORTC)
NIHR Clinical Research Network: Cancer
University Hospital Southampton NHS Foundation Trust

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Last review date

CRUK internal database number:

11199

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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