Quality of life

People taking part in the MS01 trial are asked to give information about their quality of life. The trial is designed to find out how patients feel both physically and emotionally before, during and after the different treatments.

You will be asked to fill in a brief questionnaire at your pre-treatment check-up. After this you will be asked to complete further questionnaires every three weeks for the first 21 weeks and then every eight weeks.

The questionnaires ask you about how you have been feeling during the previous week. They are designed to assess your day-to-day well-being, as well as looking at aspects of your life such as any symptoms you have, how you feel, and how well you are able to carry out everyday tasks.

The researchers can then compare these results with those of people having the other treatments. This information will help doctors to know what treatment is best for people with mesothelioma in the future.

Some of the questions you are asked may seem unrelated to your treatment. For example, you may be asked questions such as: ‘Do you have trouble taking a long walk?’ ‘Have you had trouble sleeping?’ ‘Have you had difficulty in concentrating on things, like reading a newspaper or watching television?’

If having chemotherapy or any of the active symptom control treatments has an effect on any of these, it is influencing your quality of life.

It is important to fill in your questionnaires by yourself and to try to answer all of the questions even if they do not seem related to your situation. You don’t need to spend too much time thinking about each answer, as your first response is likely to be the most accurate.

These questionnaires are treated confidentially and the information is anonymous when the results are collected. This means you can feel free to write exactly how you feel without trying to put a brave face on things.

The questionnaires are sent to the Medical Research Council Clinical Trials Unit, where they are analysed alongside those from other people taking part in the trial.