A series of research studies at the BC Cancer Agency have led to the development of a decision aid for use by women diagnosed with ductal carcinoma in situ of the breast (DCIS) in selecting their treatment options. This work has been funded by the Canadian Breast Cancer Foundation - BC/Yukon Chapter.
Ductal carcinoma in situ (DCIS) of the breast is a pre-cancerous condition often diagnosed through screening mammography. DCIS will lead to invasive breast cancer in 14-60% of women if left untreated for 10 years. For this reason, it is recommended that women with DCIS receive treatments which may include partial mastectomy, mastectomy, radiation, and Tamoxifen. With treatment, the overall chance of surviving DCIS in 10 years is 98%, with some variation in the chance of DCIS returning locally between treatment options.
We know from other studies that although women with DCIS have an excellent prognosis, they often overestimate their chance of death from DCIS. Other studies have also shown that women treated for DCIS are not adequately informed about the fact that the different treatments for DCIS do have some differences in the rates of success. For example, the chance of requiring additional breast surgery at a later date can vary with each of the treatment choices.
Given the high survival rate, there are multiple reasonable treatment options for many women with DCIS, and the best treatment option is often one that is consistent with their values. Therefore, women with DCIS may benefit from a decision aid in selecting their treatment. We have developed a decision aid for women with DCIS by conducting focus groups with women who have already been treated for DCIS and asking them to identify what information was important at the time of diagnosis. We then surveyed more women to identify the questions that are most frequently considered important. The decision aid was written and reviewed by health care professionals and DCIS patients. It is a paper booklet answering the top 100 hundred questions identified by women and health professionals as important to have answered at the time of diagnosis.
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We are now in the process of using the decision aid in a pilot study. Twenty women are being asked about their knowledge of DCIS and their uncertainties about their treatment decisions before and after using the decision aid. We are evaluating whether the aid is helpful in increasing knowledge and making treatment decisions easier. We have recruited 12 women thus far, and the preliminary data suggests that the decision aid is helpful in these two areas. If the final results continue to show this, the goal is to make the booklet available to all women diagnosed with DCIS in the province.
We are very grateful to all the women who have participated in all of the phases of the study in order to help future women diagnosed with DCIS have access to this decision aid.
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