A study to improve how we collect information about side effects of cancer treatment (PRECIOUS)

Cancer type:

Cervical cancer

Prostate cancer

Womb (uterine or endometrial) cancer

Status:

Results

Phase:

Pilot

This study tested a questionnaire looking at side effects during and after radiotherapy for womb, cervical and prostate cancer.

More about this trial

Radiotherapy uses radiation to destroy cancer cells in the treated area. But sometimes damage to nearby healthy cells can cause both short term side effects and long term side effects. As more people are living longer after radiotherapy they are more likely to have long term side effects, which may affect their quality of life.

The more doctors understand about these long terms side effects, the better they will be able to recognise and treat them. The researchers in this study developed a questionnaire that helps identify difficulties people have following their treatment. They wanted to test these questionnaires with patients. And see how easy it is to complete them electronically, instead of on paper. The aims of this study were to

Test how accurately the questionnaires identify treatment side effects
Find out how practical the electronic questionnaires are
See if the electronic questionnaires gain as much accurate information as paper questionnaires

Summary of results

The first results the researchers have published were for people with prostate, cervical or womb cancer. From this research there was little difference between the electronic and paper versions of the questionnaires in terms of accurately recording side effects. There was also no clear preference for one type. However, the researchers have concluded that recording side effect information using an electronic version of the questionnaire has benefits. But they also said paper questionnaires should be available for those who were not confident using computers or electronic tablets.

For this part of the study the researchers recruited 40 men with prostate cancer and 37 women with cervical or womb cancer. Both groups were treated with external radiotherapy.

Both groups were asked to complete questionnaires before, during and after treatment and then again 12 months after they finished treatment. The questionnaires for each group were designed around the types of side effects that could be expected from radiotherapy for their cancer.

The researchers asked both groups to complete a mixture of paper and electronic versions of the questionnaire. They found

There was little difference between the side effects recorded on either a paper or electronic version of the questionnaire
On average it took both groups longer to complete the electronic version of the questionnaire at about 10 minutes. The paper version for the cervical cancer group took just under 7 minutes and for the prostate cancer group just over 9 minutes.
Of 66 people asked, 18 preferred the electronic version, 17 people preferred the paper version and 31 people had no preference.

When discussing the findings of the study, the researchers concluded a preference for the electronic version of the questionnaire because

It is acceptable to patients
It allows a health professional to immediately create a summary of someone’s symptoms which could help in follow up appointments
The patient recording their symptoms lessens the risk of error when details from a paper version of a questionnaire are recorded electronically
Using less paper is a greener approach and one which could be significant in large studies where people may be followed up for many years

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.