A study of decision making in breast cancer prevention (ENGAGE)

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.

Results
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.

Interviews
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 (peer reviewed ) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.