The DCIS State of the Science panel recommended that future research focus on the impact of decision aids for DCIS (4). Unfortunately, there have been no trials of decision aids for DCIS. A Cochrane systematic review evaluated 55 trials of decision aids addressing 23 different screening or treatment decisions and found that using such aids led to greater knowledge, more accurate risk perceptions, greater comfort with decisions, greater participation in decision making, fewer people remaining undecided, and fewer patients choosing major surgery (2). It is unclear if the results noted in trials of decision aids on topics other than DCIS are applicable to the clinical situation encountered by women facing a new diagnosis of DCIS. The heightened sense of anxiety among women with DCIS and the limited data on the natural history of DCIS make this clinical encounter particularly challenging (26,27).

Patients may choose a different treatment option after using decision aids, suggesting that standard practice may not sufficiently educate patients in the complexities of their medical decisions (2). Interestingly, patients whose physicians use decision aids are more likely to choose a less invasive treatment option (28), and patients who engage in shared decision making are more likely to disagree with recommendations for more invasive options. This suggests that using decision aids helps to clarify patients’ values and preferences, even when their values differ from those of their physicians. Patients who use decision aids also report less decisional conflict and greater satisfaction with their treatment decision than patients who do not, suggesting that shared decision making empowers these patients to choose a treatment option that best fits their values (28).

To implement decision aids, we need patients who are interested in being informed and activated to participate in their health decisions, as well as clinicians and hospitals that are receptive to patient participation. Practical systems and protocols for the routine use of decision aids are also needed, as is a health-care environment that rewards good decision-making processes rather than simply a high volume of tests and procedures.

Because so many people have trouble grasping the difference between relative and absolute risks, providers need to exercise special care when they talk to patients. Some studies find that natural frequencies are the easiest way for women to understand risk (20,29).

One additional strategy in communicating with patients about a new diagnosis is to place the patient’s risk of developing an invasive breast cancer in the context of developing other diseases (20). Women rarely die of breast cancer after a diagnosis of DCIS; they are more likely to die of many other causes. For example, among 1000 women 65 years of age who never smoked, eight may die of breast cancer in the next decade and 25 may die of coronary disease (30). Any information provided to patients should be suitable for communication in verbal, numeric, and also visual formats (31–33). A considerable body of research suggests that visual displays aid in understanding risk (31,32,34–37), although more study in the general area of decision support tools is warranted.

The way risk information is presented, including the framing of the discussion and the choice of words, can affect how patients interpret this information. Providers need to decide how to approach the discussion, and they must be able to express logically equivalent information in different forms. Positive framing emphasizes healthy outcomes and the absence of disease, while negative framing emphasizes the presence of disease. A positive frame seems preferable for most patients. For example, after 10 years, more than 98% of women diagnosed with DCIS will not die of breast cancer (38). We can also describe this as 980 of 1000 women diagnosed with DCIS will not die of breast cancer in 10 years (27).

Much of the literature about cancer risk deals with relative risks, which sound more threatening than absolute risks (39). A hypothetical example of 100 patients with DCIS undergoing two different treatments, breast-conserving surgery with radiation vs mastectomy, is provided in Figure 3 for illustration purposes. Both groups of women here are assumed to have a 30% relative risk reduction in ipsilateral recurrence by taking tamoxifen for 5 years (1). However, while this risk reduction sounds impressive, the figure shows that the absolute number of women who benefit in each group is quite different. This is because the baseline risk of recurrence is different: approximately 15% among women who had breast-conserving surgery with radiation (scenario 1) and approximately 1.4% among women who had a mastectomy (scenario 2) (1,2). In scenario 1, 15 of the 100 patients are at risk of recurrence of the disease without tamoxifen. If all 100 women take the medication, a 30% relative risk reduction will mean that five women will benefit from the treatment. In scenario 2, the baseline risk of recurrence is much smaller, at 1.4%, but with the same 30% relative risk reduction, thus out of 100 women who take tamoxifen after a mastectomy, the number who will benefit from the treatment is less than 1. As shown in Figure 3, if the recurrence rate is 15% vs 1.4%, the absolute numbers of patients benefiting from the treatment are quite different, even with the same 30% relative risk reduction. It is important to note that this example only depicts the benefits of tamoxifen on ipsilateral recurrence and does not include the effect on contra-lateral breast cancer risk for either group of women with DCIS (40,41).

The State of the Science DCIS panel identified patient communication for the diagnosis and treatment of DCIS as a critical area for future research. Included in this recommendation was research involving the use of an informed consent process that takes place when a woman is considering undergoing screening mammography. Screening invitations should present both benefits and harms in a balanced fashion and should offer, not encourage, participation (42–44). As it relates to DCIS, introduction of an informed consent at the time of mammography invitation may provide opportunities to introduce the concept of carcinoma in situ and the potential harms from overdiagnosis and overtreatment of otherwise indolent DCIS. The concern of overdiagnosis of DCIS stems from the marked increase in the incidence of DCIS since the 1970s coinciding with an increased use of screening mammography (26,45). The most rapid increases were among women aged 50 years and older. In 1975, approximately six per 100 000 women were diagnosed with DCIS, the current age-adjusted incidence rate of DCIS is 32.5 per 100 000 women, and at age 50–64 years, the incidence is approximately 88 per 100 000 women (4). Knowing this information before screening may have implications not only on the decisions to screen but also on women’s anxiety levels and the treatment decisions once a diagnosis of DCIS is made.

One additional strategy in communicating with patients about a new diagnosis is to place the patient’s risk of developing an invasive breast cancer in the context of developing other diseases (20). Women rarely die of breast cancer after a diagnosis of DCIS; they are more likely to die of many other causes.

Patients’ values are also fundamental in treatment decisions, so listen carefully to what they say (eg, “I hate being on medications”). Ask them how they would like to participate in these decisions, and what they want to know (46). Make sure you understand any expectations and past experiences that may be relevant to the decision.

Recognize and validate her emotions during the clinical encounter. Acknowledge that a diagnosis of DCIS can be frightening and confusing. Check frequently to see if she understands what you have said or if she has any questions.

We encourage the use of nonmedical language. Medical terminology can be confusing and often holds little meaning for patients. When communicating a diagnosis of DCIS, use simple words that are easy to understand. Consider the patient’s frame of reference, and use concepts that are inclusive and culturally appropriate. Explain treatment options in lay language and describe how the patient herself may experience the treatment.

During the clinical encounter, address the uncertainty related to this diagnosis. Explain that, although we know a good deal about DCIS, we need to do more work before we can accurately assess the risks and potential harms. Make sure to discuss the uncertainties of treatment options in addition to the uncertainties about the natural progression of the disease if it is left untreated.

If possible, identify and deal with misperceptions. Breast cancer and related conditions such as DCIS have been regularly featured in health-care news, and a great deal of sensationalized and often inaccurate information has been disseminated (14). Talk with patients about separating the scientific data that support our current understanding of DCIS from the sensational factoids.

Use both positive and negative framing when describing clinical outcomes. It is important for physicians to emphasize the potential for positive outcomes. This approach can greatly reduce patients’ anxiety when they hear the initial diagnosis of DCIS.

Make certain that the patient does not rush to make her decision about treatment. Remember to let your patient know that there is time to make a treatment decision and that she does not need to make the decision that day. Encourage her to come back to discuss options after she has had time to think about and discuss them with family and friends.