“Deborah agreed to take part in a trial as she was keen to help other cancer patients in the future. "If taking part in a trial means others might be helped then I’m very happy with that."
A study looking at developing a tool to help young women make decisions about breast cancer treatment
This study looked at a way of helping young women diagnosed with breast cancer make decisions about their treatment.
In this study, researchers wanted to understand more about the experiences of women under 40 years old who have been diagnosed with and treated for early stage breast cancer. They wanted to learn more about the information that was available and how this group of women made decisions about the type of surgery they had.
The researchers then used this information to develop a tool that could help other young women to understand their treatment options and decide about the best surgery to have in their individual circumstances.
Summary of results
The research team used information from patients to develop an online decision aid for young women diagnosed with breast cancer.
This study recruited 32 women aged between 23 and 40, who had all had surgery for early stage breast cancer.
First of all, the research team interviewed 20 women to find out what information they thought would have helped them make decisions about which type of surgery to have. They found there were 5 main categories of information they would have liked. These were
- The different types of surgery
- The other types of treatment available
- The effects that different treatments would have on their fertility
- The different types of breast cancer
- What happens when you’re in hospital
Next, the research team looked at these elements in more detail with a focus group of 12 women. They talked more about what was relevant to them, and what would help them make a decision about the type of surgery to have.
They then put all this information together and developed an online decision aid. A group of 27 women tested this in a pilot study. The results showed that using the online aid gave them more confidence to make decisions. The women in the pilot study also suggested some things that could be changed to improve the online aid. These included factors relating to the information itself, and to the look and layout.
Some women taking part also felt it would be important to include information about genetic testing. Women with certain genetic faults have an increased risk of developing cancer in the other breast, and so may need to decide whether to have more extensive surgery or not. Sometimes younger women in particular find this decision very difficult.
The research team concluded that the decision aid should now be tested in a larger trial to see if it can help improve knowledge and confidence in young women making decisions about treatment for breast cancer.
We have based this summary on information from the team who ran the study. As far as we are aware, the information they sent us has not been reviewed independently (
How to join a clinical trial
Professor Diana Eccles
Dr Claire Foster
NIHR Research for Patient Benefit (RfPB) Programme
NIHR Clinical Research Network: Cancer
University of Southampton