"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study looking at genetic testing in ovarian cancer (GTEOC)
This study looked at whether people find it acceptable to have a test for inherited gene changes after they have been diagnosed with ovarian cancer.
More about this trial
There are several factors that increase someone’s risk of developing ovarian cancer. One of the risk factors is inheriting a gene with a genetic change (mutation).
An inherited genetic change means one that is passed on from parent to child. Inheriting a genetic change doesn’t mean that someone will develop cancer, but it does increase the risk that they will.
When this study was done, women were usually only offered genetic testing if they had a strong family history of ovarian cancer or breast cancer, or both. But women without a strong family history may have also inherited a genetic change.
In this study, researchers looked for inherited genetic changes in people who had already been diagnosed with ovarian cancer. When people have an inherited genetic change, it means their relatives are at risk of having it too. And therefore have a higher risk than normal of developing cancer.
Knowing this would mean that relatives could have genetic counselling and be tested themselves if they wanted to be. And maybe have screening to help diagnose cancer early so that it could be treated successfully.
Women who had been diagnosed with these cancers within the previous year could join the study:
The aim of this pilot study was to see whether:
- patients found it acceptable to have genetic testing after they had been diagnosed with ovarian cancer
- it was practical to offer the test to women at this stage
- how much it cost compared to only testing women with a strong family history of cancer
Summary of results
The team concluded that people recently diagnosed with ovarian cancer found it acceptable to be tested for an inherited genetic change.
This study was open for people to join between 2013 and 2015, and the team published the results in 2016.
About this study
Everyone taking part in this study had been diagnosed with ovarian cancer.
They all gave a sample of blood or spit (saliva), so that the study team could look for inherited gene changes.
They also completed questionnaires asking them how having the test had affected their mental health and wellbeing.
The research team then interviewed 12 patients and 5 health care professionals to find out more about what they thought about the process.
232 people aged between 28 and 90 joined this study. They had all been diagnosed with ovarian cancer, and had tests to identify inherited genetic changes.
The research team found that 18 people (8%) had a genetic change:
- 12 on a gene called BRCA1
- 6 on a gene called BRAC2
When they looked in more detail at people’s ages, they found that
- 1 out of 86 women (1%) aged 70 or more had a genetic change
- 17 out of 146 women (12%) aged less than 70 had a genetic change
And when they looked at women aged less than 70 who also had a family history of cancer, they found that 13 out 77 (17%) had a genetic change.
Quality of life results
About 3 out of 4 people taking part completed the questionnaires. They answered questions about the psychological impact of having the genetic test not long after they had been diagnosed with cancer.
The research team found that people generally thought it was ok to have the test at that time. The results showed that it was the diagnosis of cancer that affected their levels of distress. Having the genetic test did not tend to make this worse.
Cost analysis results
The research team compared the cost of testing all women who’d been diagnosed with ovarian cancer with only testing women who had a family history.
They found that the cost per person was lower if everyone who’d been diagnosed was tested. This is partly because there is less admin involved in assessing and identifying people to test.
But the overall cost would be higher, because more people would have the test.
The research team felt that it could be an option to test women less than 70 years old who’d been diagnosed with cancer. This is because so few women aged 70 or more with ovarian cancer had a genetic change.
The research team interviewed 12 patients and 5 members of staff. The interviews lasted between 25 and 90 minutes.
The results showed that having a genetic test was not a great concern to the women, compared to being diagnosed with cancer. But the results could affect their relatives.
Some of the points raised about the test and test results included:
- patients often agreed to have the test if it could help relatives, especially if they had daughters
- they usually discussed it with their family before deciding whether to have the test or not
- if the results showed no genetic change, this was a relief as their relatives didn’t have an increased risk of developing cancer
- some people found a positive test helped explain why they had developed cancer
- some people with no family history or relatives declined the test because they didn’t want to know
- a positive result may cause difficulties for families who don’t get along or communicate very often
And there were some points about the timing of the test:
- the health care professionals felt they could assess whether the timing was right to discuss the test with individual people
- it may not be good to offer the test too soon after diagnosis as patients already have a lot to take in
- it is better to give a small amount of information to begin with, just making people aware that the test is an option
The research team concluded that women with ovarian cancer found being tested for an inherited genetic change acceptable. And that it didn’t increase distress more than being diagnosed with cancer.
They found it could be more cost effective to test women aged less than 70 who’d been diagnosed with ovarian cancer.
Where this information comes from
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed) and published in a medical journal. The figures we quote above were provided by the study team who did the research. We have not analysed the data ourselves.
How to join a clinical trial
Dr Marc Tischkowitz
Cambridge University Hospitals NHS Foundation Trust
NIHR Clinical Research Network: Cancer
Target Ovarian Cancer