“I had treatment last year and I want to give something back.”
A study of decision making in breast cancer prevention (ENGAGE)
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This study wanted to understand how women decide whether they should take medication to reduce their risk of getting breast cancer. So that in the future women can be given more support when making this decision.
Cancer Research UK supported this study.
More about this trial
This study started in 2015 and these results were published in 2018.
Breast cancer is the most common cancer in the UK. Some women have an increased risk of developing breast cancer due to a family history and inherited
Women who have a moderate or high risk of developing breast cancer are usually offered a drug called tamoxifen. But tamoxifen can cause side effects such as hot flushes and gynaecological changes. So some women choose not to take tamoxifen.
In this study, doctors wanted to:
- see how many women decide to take tamoxifen
- find out whether there are social, economic and demographic differences between the group of women who take tamoxifen and those who don’t
- understand how women decide whether they should take tamoxifen or not
Summary of results
The study team concluded that the number of women who take tamoxifen is low. And family priorities such as having children is a key factor that influences their decision.
732 women were invited to take part. Everyone had a moderate or high risk of developing breast cancer.
Everyone was asked to complete a questionnaire:
- when they joined the study
- after 3 months
Of the 732 women who were invited to take part, 258 women completed both questionnaires.
The study team looked at the number of women who started tamoxifen. They found that only 1 in every 7 women started tamoxifen.
The study team also found that women with children were more likely to start tamoxifen than women without children:
- almost 18 out of every 100 women (18%) with children started tamoxifen
- only 4 out of every 100 women (4%) without children started tamoxifen
Researchers didn’t find any other factor that affected the number of women taking tamoxifen.
The researchers interviewed 16 of the women. They wanted to understand how women decide to start taking tamoxifen. And what influences this decision.
The study team found 3 themes that influence the women’s decision:
- children – women thought of their children, not just themselves when deciding whether or not to take tamoxifen. They also thought about how the side effects may affect their ability to care for their children and parents
- other people’s beliefs – women were influenced by the attitudes, beliefs and previous experiences of their families about tamoxifen. Women had more negative attitudes towards tamoxifen when their families lacked trust on this drug (mistrust of tamoxifen)
- emotional response to risk – women had different emotional responses to cancer risk such as anxiety, fear, denial and feeling like they had a lack of control over it
What did the doctors conclude?
The study team found that only a small number of women take tamoxifen. They think that family priorities, especially having children is the main factor that influences their decision.
The team didn’t find any social, economic or demographic differences between the group of women who take tamoxifen and those who don’t. But they think that social, economic and demographic differences may influence the number of women going to see their GP originally (primary care presentation).
The team think that women should be encouraged to discuss their beliefs and concerns about tamoxifen with their doctors. This might help them make an informed decision.
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
Dr Samuel Smith
Cancer Research UK
NIHR Clinical Research Network: Cancer
NIHR Clinical Research Network: Genetics