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The University of Southampton
Macmillan Survivorship Research Group

Research for Patient Benefit Programme

Development and pilot study of an online interactive surgical decision aid for young women newly diagnosed with early stage breast cancer


Applicants: Diana Eccles, Claire Foster, Peter Simmonds, Doug Altman, Ramsey Cuttress

Researchers: Sue Gerty, Alejandra Recio

Breast cancer is the most common cancer in women aged 40 or under but nevertheless comprises fewer than 5% of all breast cancers treated in most cancer centres. When diagnosed, women may have a choice between mastectomy or breast conserving surgery, however, for younger women (under 40), the chance of dying of breast cancer is greater than for older women and in the battle against breast cancer women may feel compelled to choose the most extreme treatment option. Many factors affec women's decision, including that although more extensive surgery reduces the potential that breast cancer will come back in the breast, it does not alter the chance that it will recurr at distant sites.

Decision aids are tools that help to convey disease and treatment information in an interactive way. They can improve patient understanding, reduce uncertainty and lead to greater satisfaction with the decision made. Service User groups confirm that information to support decision making specifically in younger women with breast cancer is lacking and is a priority for research.

This pilot study will use age specific outcome data to formulate a decision aid designed specifically for women with young onset breast cancer. The decision aid will be developed and piloted in collaboration the Breast Cancer Care Service User Research Partnership who will support the development and initial evaluation of the decision aid. A subsequent large randomized evaluation study will measure how effective the decision aid is for improving knowledge and in helping women feel confident and comfortable with the decision reached.

If you have any queries regarding this study please contact the MSRG secretary on 02380 596885, or email msrg@soton.ac.uk.

National Institute for Health Research

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