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. The impact of this disease is magnified when diagnosed at an early age as it affects women during the reproductive and child rearing phases of their lives.
Most women present with potentially curable cancer (no evidence of spread beyond lymph nodes). Most will have a choice between mastectomy or breast conserving surgery. 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, even occasionally choosing bilateral mastectomy. 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 recur 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. An online interactive decision aid will be developed that is relevant to younger women diagnosed with 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.
Applicants: Diana Eccles, Claire Foster, Peter Simmonds, Doug Altman, Ramsey Cuttress
Researchers: Sue Gerty, Alejandra Recio
NIHR Research for Patient Benefit Programme
Cancer research