Around 1 in 5 people diagnosed with cancer in the UK take part in a clinical trial.
A study testing a questionnaire that people could use at home to report problems they have during cancer treatment (REPORT UK)
This study was done to test a questionnaire that people can use at home to report any side effects they have during clinical trials for cancer treatment. This study was supported by Cancer Research UK.
More about this trial
It is very important that people report any side effects or problems they have during clinical trials. This helps researchers see how safe treatments are. It also adds to the information used to write guidelines on how to prescribe treatments, and information for patients.
In this study, researchers developed an electronic system which meant that people could fill out a questionnaire about side-effects on a computer or over the phone at home. This helps people record any problems more quickly, rather than waiting until their next clinic appointment when things may not feel as bad.
There were several parts to this study. First of all the research team used feedback from patients to develop a set of questions to ask. Then they developed the computer and telephone systems to use.
In this part of the study, they wanted to find out what people thought about using these electronic systems to report their side effects.
The research team collected information in two different ways. The first was information about side effects caused by treatment. The second was something called patient reported outcome measures (PROMs). This is a way of measuring what patients think about the treatment, their symptoms and their health generally.
The aim was to find out whether people having treatment for cancer were happy to report side effects themselves, from home.
Summary of results
This study recruited 249 people with a number of different cancers. Of these:
- just over 8 out of 10 (82%) preferred to use the online system
- just under 2 out of 10 (17%) preferred to use the telephone system
- a very small number (less than 1%) chose to use both systems
The research team sent a text message or email once a week to remind people to report any side effects they were having. They looked at how many people reported them, and found it was:
- more than 9 out of 10 people (93%) at the beginning
- nearly 7 out of 10 people (67%) by week 12
The research team also sent a text message or email once a month to remind people to report their PROMs. They looked at how many people reported them, and found it was:
- more than 9 out of 10 (96%) at the beginning
- more than 6 out of 10 (62%) by month 3
The people taking part reported that both the online system and the telephone system were easy to use. Neither took too long to complete, but the online system was quicker.
The study team concluded that patients were happy to use these systems to report side effects. They are now using the computer based system in other clinical trials, comparing it to more traditional ways of collecting information about side effects.
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Professor Galina Velikova
Cancer Research UK
NIHR Clinical Research Network: Cancer
University of Leeds