“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 a way to help women decide about breast reconstruction after surgery (PEGASUS)
This study looked at a discussion tool to help women decide whether to have breast reconstruction after breast cancer surgery. It was for women thinking about having reconstructive surgery following a mastectomy.
The study was open for people to join between 2016 and 2018. The team published the results in 2021.
More about this trial
Doctors often treat breast cancer with surgery. Some women have an operation to remove their whole breast (a mastectomy). They often choose whether or not to have breast reconstruction after their mastectomy.
This creates a breast that is similar size and shape to their own. But the reconstructed breast may not be identical. And people can see the differences when they are undressed. So not everyone wants to have reconstruction.
Doctors and nurses give support, and help people decide what to do. But it can be difficult to decide. And some women find it difficult to talk about it.
The researchers in this trial have developed a tool to help women in this situation. It is called PEGASUS. This stands for Patient’s Expectations and Goals: Assisting Shared Understanding of Surgery.
It asks women about:
- how they feel about their breasts
- their expectations of the reconstruction surgery
- how important the surgery is for them
The main aims of this study were to find out:
- whether PEGASUS can help women decide whether to have breast reconstruction or not
- what women and health care professionals think about the PEGASUS tool
Summary of results
A total of 147 women joined this study. The team were able to look at results for 138 of them:
- 52 who used the PEGASUS tool
- 86 who had help and support from the team as usual
The researchers asked the women taking part to complete a questionnaire when they joined the trial. And then again 3, 6 and 12 months later.
The questionnaire included questions about how they felt about their breasts, reconstruction surgery and the decision they had made.
They asked 40 people what they thought about breast reconstruction in more detail:
- 16 people who’d used the PEGASUS tool
- 11 people who’d had usual care
- 13 health care professionals
Deciding whether to have breast reconstruction can be a bit overwhelming. The research team found that the PEGASUS tool helped some women decide what was important to them. And whether or not to have breast reconstruction. It also helped some health care professionals focus on what was important for each woman.
There wasn’t much difference in quality of life or satisfaction with care between the two groups. But more women in the PEGASUS group were happy with the decision they’d made.
They also found that it was difficult to run this study in some hospitals. This is partly because the staff sometimes change quite often. And partly because there can be several different trials or studies running at the same time.
The study team hope that health care teams will use the PEGASUS tool to help their patients decide what to do. They have made it available for hospitals to use free of charge. There is more information about it on the PEGASUS website:
More detailed information
There is more information about this research in the references below.
Please note, these articles are not in plain English. They have been written for health care professionals and researchers.
Challenges and reflections from a multi-centre trial of a psycho-oncology intervention to support shared decision-making in breast reconstruction
P Tollow and others
European Journal of Cancer Care, 2021. Volume 30, Issue 2.
'They were aware of who I was as a person': Patients' and health professionals' experiences of using the PEGASUS intervention to facilitate decision-making around breast reconstruction
P Tollow and others
European Journal of Cancer Care, 2021.Volume 30, Issue 5.
A multi-centred sequential trial comparing PEGASUS, an intervention to promote shared decision making about breast reconstruction with usual care
N Paraskeva and others
Journal of Plastic, Reconstructive & Aesthetic Surgery.
Published online 15th November, 2021.
Where this information comes from
We have based this summary on the information in the articles above. These have been reviewed by independent specialists (
How to join a clinical trial
Professor Diana Harcourt
Breast Cancer Now
University of the West of England