Since the advent of mammographic screening for breast cancer, ductal carcinoma in situ (DCIS) has become a common diagnosis, accounting for almost one-third of mammographically diagnosed breast cancers [1, 2]. Recent data from the California Cancer Registry indicate an increase in the incidence of DCIS among Latina women from 9.6/100,000 in 1990 to 19.5/100,000 in 2009 and an increase in incidence among non-Latina white women from 20.2/100,000 in 1990 to 35.1/100,000 in 2009 [3]. While DCIS is not life-threatening and is highly curable, it can progress to invasive disease if left untreated and does confer an increased risk of future breast cancer. Evidence suggests that up to 50 % of untreated DCIS may progress to invasive breast cancer over a women’s lifetime [4].

The primary goal of DCIS treatment is to prevent invasive breast cancer [5]. Treatment options include mastectomy which is associated with a recurrence rate of only 1 % or breast-conserving surgery (BCS), with or without radiation therapy. BCS has comparable survival rates to mastectomy but has higher rates of local recurrence, particularly without radiation therapy [6–8]. Hormonal therapy may also be recommended for some DCIS patients [9]. Given the range of therapeutic options and the decisions required to determine the optimal treatment approach, patients need a clear understanding of the risk implications of a DCIS diagnosis in order to make informed treatment decisions. However, communicating the risk implications of DCIS can be challenging due to their complexity [10].

One prior study demonstrated that although women with DCIS were satisfied with their care, there were significant gaps in women’s knowledge about their diagnosis. These knowledge gaps were particularly notable with regard to the course and severity of the disease, and understanding of future breast cancer risk. Participants in this study were from a single clinical site and were almost all white [11]. Two more recent studies from Australia also demonstrated a knowledge gap about the lack of metastatic potential of DCIS, finding that women who thought DCIS could metastasize were more likely to be worried about dying from DCIS [12, 13].

This already-complex communication challenge is further complicated when there exists a need to communicate health information across culture and language. Less acculturated Latinas are more likely to be worried about their breast cancer diagnosis and worry is associated with a poorer understanding of information [14]. Additionally, language barriers may impede Spanish-speaking women from asking all of their questions at the time of breast cancer diagnosis [15]. There is limited information about the knowledge of DCIS particularly among Latina women. In a prior multi-ethnic, multilingual study examining women’s knowledge of early-stage breast cancer, the authors found that only one-fifth of patients understood that there was a difference in recurrence rate between mastectomy and breast-conserving therapy and only half of patients knew that survival rates were equivalent across treatment strategies [16]. This study did not report results for women with DCIS separately from those with Stage I invasive breast cancer, nor did they report results separately for 8 % of the sample that was Latina.

Given the paucity of literature regarding the understanding of DCIS in Latina women, in the current study we sought to evaluate knowledge of DCIS among a cohort of English- and Spanish-speaking Latina and English-speaking non-Latina white women previously treated for DCIS. We hypothesized that due to a language barrier, Spanish-speaking Latinas would be least likely to know the risk implications of a DCIS diagnosis.

Of the 1,231 women eligible for the study, attempts to contact them resulted in 319 refusals, 167 non-respondents, and 745 completed surveys. Whites had a higher completion rate than Latinas (67 % and 55 %, respectively) [17]. From this group of 745, a total of 710 patients answered the knowledge survey questions and were included in this study.

This multi-ethnic, multilingual study design provided an ideal opportunity to investigate patient–provider exchange of information regarding DCIS, a complex and often poorly communicated diagnosis.

In this study of DCIS knowledge in a cohort of Latina and non-Latina white women, we hypothesized that Spanish-speaking Latinas would have poorer knowledge about the risks and prognosis related to DCIS than their English-speaking counterparts. However, our results reveal a more complicated scenario. Less than half of all women (41 %) demonstrated accurate knowledge about the long-term clinical impact of DCIS, even among those having attained a college education. While knowledge that DCIS is not itself life-threatening was low in our study overall, both Spanish- and English-speaking Latinas were less likely to correctly answer this question when compared to white women. In contrast, Spanish-speaking Latinas were more likely than their English-speaking counterparts—both Latinas and whites—to know that a diagnosis of DCIS confers an increased risk of a breast cancer diagnosis in the future. There was no difference among groups in knowledge of the risk of invasive cancer if DCIS is left untreated—the vast majority of women in all groups were aware of this risk. There was also no difference in the understanding of DCIS treatment and mortality. The majority of women in all groups lacked an understanding of this relationship, with less than one-third of all women indicating that there was no impact on mortality based on treatment choice. Overall, these findings suggest that overall knowledge of the prognosis and treatment implications for DCIS are poorly understood. Among Spanish-speaking women diagnosed with DCIS, there appears to be a clear message from their physicians about the risks, but perhaps not about the good prognosis of DCIS.

Our findings are consistent with prior studies of primarily white women who have found knowledge gaps in those diagnosed with either DCIS or invasive breast cancer [11–13, 16]. Importantly, these and other studies have indicated that less knowledge is associated with more anxiety and distress [10, 13, 18]. One qualitative study by members of our group found that Latinas tend to have more distress about their diagnosis than whites [19]. Thorough information exchange has the potential to build positive relationships between patients and their providers and furthermore may help women build a sense of mastery over their breast cancer [20]. The lack of such an exchange likely contributes to less knowledge and more worry. These results complement other research by our team where we asked breast surgeons and oncologists about challenges in communicating prognosis with patients across language barriers. More than half of the breast cancer physicians surveyed expressed experiencing difficulty discussing prognosis with their limited English proficient (LEP) patients and the majority worried that their LEP patients might not be asking all of their questions during these discussions [15]. Together with our current findings that Spanish-speaking women understand DCIS risks better than prognosis, it appears that physicians may focus on messages about the importance of treatment and follow-up in DCIS when communicating with LEP patients, rather than more positive and complex messages about the differences between DCIS and invasive cancer in terms of prognosis. Furthermore, Spanish-speaking Latina women may be less likely to ask questions to clarify their understanding, leading to poorer overall knowledge about their prognosis [21].

Importantly, we noted that despite the complexity of these discussions, only three Spanish-speaking women in our study reported having a professional interpreter present during visits with their cancer physicians. Professional interpreters have been shown to improve patient outcomes and patient and physician satisfaction with care for LEP patients across a spectrum of conditions and clinical settings [22]. The absence of professional interpreters and the use of ad hoc family and clinic staff not trained to interpret may have contributed to a more reductionist approach to communicating about risk and prognosis associated with DCIS [23]. Physicians likely focused on a discussion of risk and the need for treatment to prevent invasive disease. Furthermore, patients may not have had sufficient opportunity to ask questions. Moreover, according to National Culturally and Linguistically Appropriate Services (CLAS) Standards in Health and Health Care, providers who received federal funding are mandated to provide language assistance to LEP patients [24]. The mandate requires that patients are made aware of language services and further suggests that the use of untrained interpreters should be avoided. The lack of provision of trained interpreters is not only of utmost importance to patient care, but is also a federal mandate.

This study has limitations, most notably the fact that women were interviewed on average two years after their diagnosis, which may have led to inaccurate recall of events that occurred around treatment. While answers to the knowledge questions may not accurately describe knowledge at the time of diagnosis and treatment, it has been shown in other longitudinal studies that perception of risks related to breast cancer does not change over time [18, 25]. An additional limitation of this survey-based study is that we were not able to observe actual discussions about risk and prognosis between participants and their physicians and had to rely on self-reported data. Another limitation is the fact that only 60 % of eligible women completed the survey which could make the findings less generalizable. However, women from all geographic areas of California, representing a wide range of socio-demographics did participate. Despite these limitations, our findings do provide insight into the overall poor understanding of DCIS among those having gone through treatment for the disease and indicates a clear need for improved communication around presenting treatment options and prognosis.

In this multi-ethnic, multilingual study of women with a recent history of DCIS diagnosis and treatment, participants had greater knowledge of the worrisome risks conferred by DCIS than the nuances of DCIS as a non-life-threatening disease with a good prognosis. This knowledge imbalance was most marked for Spanish-speaking Latina women, and may be a reflection of physicians’ simplified communication with patients in the face of cultural and linguistic barriers. Culturally and linguistically appropriate standardized information about risks, treatment options, and prognosis would improve knowledge for all women diagnosed with DCIS. In particular, surgeons and oncologists treating LEP patients should be encouraged to use professionally trained interpreters to avoid overly simplified messages and promote more thorough information exchange.