This page tells you about how researchers assess people’s quality of life. This means looking at how your treatment or illness affects you. It includes information about
Quality of life assessment
Many trials include a quality of life assessment, especially if the trial is comparing treatments. It may be included as part of the main trial. Or it may be classed as a separate quality of life study (sometimes called a sub study).
It is important to find out how treatments affect people’s day to day life, rather than just focus on how well they work. People will be more likely to continue with treatment if it has fewer side effects, for example.
The research team will probably ask you to fill in some questionnaires as part of the trial. These will ask you about things such as pain, tiredness or anxiety. They usually also ask about any side effects you’ve had, and how you are coping with day to day life.
Some questionnaires are designed to be used by anyone having treatment for cancer. They will usually ask you quite general questions about how you are feeling.
Some questionnaires are designed for people having treatment for a particular type of cancer. So they may ask you more about specific symptoms or possible side effects of treatment.
Most researchers will ask you to fill out a questionnaire before you start treatment. This is called the baseline questionnaire, and means the research team can see how your quality of life changes over time. They will probably ask you to complete more questionnaires as you go through treatment, and again after you finish treatment. How often and for how long will depend on the trial you are taking part in.
Sometimes they will ask you to complete questionnaires regularly for some years after you finish treatment. This could be because there is a risk of long term side effects.
Pain can be a problem for some people with cancer, and the research team will want to know if your pain is better or worse as you go through treatment.
Most quality of life questionnaires will ask you about any pain you may be having. But sometimes research teams want to assess pain in more detail. There are a number of ways they can do this, including asking you to:
- rate how bad your pain is on a scale from 0 to 10 (or 0 to 100)
- mark on a diagram of a person where your pain is
- keep a diary of when and where you get pain, how bad it is and what painkillers you take
- complete an extra questionnaire which asks you in more detail about your pain
Keeping a diary
The research team may also ask you to keep a diary. This could contain notes about how you feel after your treatment, or when you get a particular side effect and how long it lasts. Or you may note down how often you need to take painkillers. The specific details will be different for different trials.
Patient reported measures
You may hear the researchers use the terms PROM or PREM when talking about questionnaires in clinical trials. They are an important way to help improve treatment and health care.
PROM stands for patient reported outcome measures. Researchers use PROMs to assess how people are feeling, and how they rate their quality of life.
PREM stands for patient reported experience measures. Researchers use PREMs to find out what people think about the care and treatment they’re having or have had.