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

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 ) 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.