“I think it’s essential that people keep signing up to these type of trials to push research forward.”
A study looking at how the result of a test used in bowel cancer screening influences people's health decisions
This study looked at how people respond to possible bowel problems after a negative bowel cancer screening result.
Cancer Research UK supported this trial as part of the National Awareness and Early Diagnosis Initiative (NAEDI).
More about this trial
Bowel cancer can be picked up by the bowel cancer screening programme. Screening means looking for early signs of a disease in healthy people who do not have symptoms. The bowel cancer screening programme aims to find bowel cancer at an early stage, when treatment is more likely to work.
The screening programme tests poo (stool or faeces) samples for hidden blood. This is called faecal occult blood (or FOB) test.
But sometimes the test does not pick up a bowel cancer. So it’s important that people who get a result that doesn’t show any blood (a negative result), continue to look out for any symptoms of bowel cancer.
Researchers in this study talked to people who had taken part in the bowel cancer screening programme and who had a negative result. They tried to understand how this result might affect people’s actions about bowel problems afterwards.
Summary of results
The research team found that some people who tested negative for bowel cancer could potentially delay looking for help if they develop symptoms.
They think the bowel cancer screening programme should continue to give a clear message for people to be aware of what the symptoms for bowel cancer are, even if they have had a negative test.
The study team invited 60 people from England and Scotland to take part. Everyone had tested negative for bowel cancer after having screening in the previous 4 to 6 months.
36 people agreed to take part. The study team put everyone into 1 of 6 groups (focus groups). Each group had a meeting. Each meeting lasted between 60 to 90 minutes.
During the meetings, the study team asked the group:
- their experiences of taking part in the bowel cancer screening programme
- if they understood what a negative test was
- about the possible problems (limitations) of the FOB test
- what bowel cancer symptoms people should look out for
The study team audio recorded all meetings and looked at the answers. They identified 4 common areas (themes):
- feelings about a negative test
- the test limitations
- bowel cancer symptoms
- how a negative test made people feel less worried
Feelings about a negative test
The study team found that most people weren’t worried or anxious while waiting for the FOB test results.
But some people with a family history of bowel cancer or who had been asked to repeat the test for any reason felt anxious.
Once the results arrived, most people were relieved. Some said that the results corresponded to what they were expecting.
The test limitations
The study team asked what people thought of the test and if they were aware that sometimes it doesn’t pick up bowel cancer. Most people were aware of this.
People that weren’t aware said they didn’t always read the information sent with the test or the results letter.
Bowel cancer symptoms
Most people said that taking part in the screening programme had made them more aware of bowel cancer and its symptoms.
People were aware that blood in the poo and a change in their
Most people said they would look for help if they notice blood in their poo, or if they had a change in their bowel habits. But some would wait some time if they had fatigue (tiredness) or abdominal pain.
The study team also found that a few people were not aware of any bowel cancer symptoms.
How a negative test made people feel less worried
A number of people in the study said they might delay looking for help if they developed symptoms after a negative FOB test.
People felt the test gave them reassurance and this could delay them taking action if they developed symptoms. But people said they would go to their GP’s if these symptoms were to continue.
The study team concluded that people’s confidence in a negative bowel cancer screening test can change their reaction to symptoms.
They think that the bowel cancer screening programme should continue to give clear messages about the:
- limitations of the test
- importance of people seeing their GP if they develop symptoms
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
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Dr Christine Campbell
NIHR Clinical Research Network: Cancer
National Awareness and Early Diagnosis Initiative (NAEDI)
University of Edinburgh