Last year in the UK over 60,000 cancer patients enrolled on clinical trials aimed at improving cancer treatments and making them available to all.
A study looking at developing a new way to report side effects of treatment online from home (eRAPID)
This study looked at developing a new way for people to report any side effects of treatment online from home.
All cancer treatments have side effects. The researchers wanted to develop a new way for people to report any side effects they may have. The new way was for people to use their computer at home to go onto a website, fill in an electronic questionnaire and receive information about how to manage the side effect. If the side effect was serious the website was set up to alert a member of the hospital staff and they would contact the person. All the information would be stored in the person’s hospital records so that the hospital staff could see it.
The researchers hoped that this would allow people to manage their side effects better and help doctors get a better picture of the side effects people have. They also hoped it would help people get medical attention for severe side effects when needed.
The first step was to develop the questionnaire for people to use on the website. The researchers asked people who were having treatment at the Bexley Wing, St James’ University Hospital Leeds to complete the questionnaire. They interviewed them afterwards to find out what they thought about it.
The aims of this study included finding out
- If the questionnaire was understandable
- How well the questions related to people’s experience
- How easy it was to complete
Summary of results
The study team found that people could understand most of the questions and that the questions were mostly easy to answer.
This was a pilot study. It recruited 60 people. Everyone completed a questionnaire about side effects they were having from their treatment.
Afterwards a member of the study team interviewed them. They were asked
- What they liked or didn’t like
- If they understood the questions
- How well the questions related to their own experience
- If they would use other words to describe their side effects
- How easy it was to answer the questions
- How they felt about filling in the questionnaire
The team tape recorded their answers so they could listen to them later on.
After 20 people the study team listened to the interviews. They found there were some questions that people found confusing or difficult to understand. They then reworded the questions and asked the next 20 people for their opinion. This listening and adapting process continued until the views of 60 people had been obtained.
The study team concluded that after making these changes they now have a better questionnaire that is easier to understand.
We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (
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.
Professor Galina Velikova
National Institute for Health Research (NIHR)
NIHR Clinical Research Network: Cancer
The Leeds Teaching Hospitals NHS Trust
University of Leeds