Original articleHow different terminology for ductal carcinoma in situ (DCIS) impacts women's concern and management preferences: A qualitative study
Introduction
The incidence of ductal carcinoma in situ (DCIS) has increased substantially since the widespread introduction of organised breast screening programmes. DCIS now represents approximately one-fifth of screen detected cancers [1], with upwards of 50 000 women diagnosed each year in the United States alone [2]. There are now concerns that the advances in screening technology and the push for early detection has led to overdiagnosis and overtreatment of lesions with low malignant potential such as DCIS [3]. Although there is dispute about the rates of progression from DCIS to invasive breast cancer, with estimates ranging between 14% and 53% [4], DCIS is almost always managed as invasive breast cancer [5], [6]. This means that many women may receive unnecessary aggressive surgery and other treatments. Data also indicates that there is an increasing uptake of more aggressive treatments for DCIS such as mastectomy and bi-lateral mastectomy rather than lumpectomy [7], [8], [9]. An alternative management option for DCIS that has been proposed and is currently being investigated in two trials [10], [11] is watchful waiting, which consists of monitoring low-risk DCIS and providing treatment when symptoms appear or change [12].
To address overdiagnosis and overtreatment of DCIS, a prominent group of researchers including breast surgeons have called for a change in DCIS terminology to remove the cancer term [13], [14]. It has been suggested that the current terminology may be a potential driver of confusion for women about the risk of progression associated with their diagnosis and the distinction between DCIS and invasive cancer [15], [16], [17]. Research has also suggested a connection between women's anxiety, inaccurate perceptions of their risk of developing invasive breast cancer and impaired decision making [18], [19], [20]. A recent study of health care professionals indicated that there is still little consensus regarding how best to explain DCIS to patients [21], with different clinicians using different terms which adds to the confusion experienced by women.
A group of high level independent experts convened by the National Institute of Health and National Cancer Institute in the US have also called for the removal of the anxiety provoking cancer term from the description of DCIS [22], [23]. Furthermore, improving communication with patients about DCIS in general has been highlighted as a top tier research priority for the management of DCIS by the Patient-Centered Outcomes Research Institute [24].
This qualitative study aimed to examine in depth how different terminologies with and without the cancer term affect a community sample of women's concern about a hypothetical diagnosis of DCIS and their management preferences. We examined how women responded to the alternative proposed terms for DCIS and their preferences for management including watchful waiting which has been proposed as an option to avoid unnecessary treatment for women with DCIS.
Section snippets
Materials and method
This qualitative study used semi-structured telephone interviews. Women were given a hypothetical scenario about a diagnosis of DCIS with different terms used to describe DCIS with and without the cancer term presented in a random order, and were asked to discuss their feelings and management preferences in relation to the scenario (see Appendix 1). The scenarios were developed by the study authors and were informed by previous published DCIS terminology research [23], [25]. Women were also
Results
The characteristics of the participants are outlined in Table 1. Women ranged between 25 and 80 years with a mean age of 56 years. Over 40% of the women had lower levels of educational qualifications (left school before or at the end of high school) and 62% of women had at least 1 mammography screen. Four of the women interviewed had a previous personal experience of an invasive breast cancer diagnosis and none had personal experience with a DCIS diagnosis.
The results are organised around 3
Discussion
In a community sample of women, psychological responses to a hypothetical scenario involving a DCIS diagnosis exhibited high concern, consistent with previous findings [18], [19], [20]. Overall, women preferred a diagnosis of DCIS to be communicated using the non-cancer term compared to that of the cancer term. Women also reacted emotionally to the term carcinoma in DCIS and voiced a preference for terminology that excluded this term, with most women preferring the description of abnormal cells
Conclusion
The medical community is currently debating whether a change in the terminology for DCIS is possible until rates of progression of DCIS to invasive breast cancer are better established [41], [42]. This study supports the view that alternative terminology that does not include the terms cancer or carcinoma – such as a description of abnormal cells – may be a less anxiety provoking option to communicate a diagnosis of DCIS to women. This could be a way to decrease confusion and anxiety which may
Author contributions
All authors included on the paper fulfil the criteria of authorship, and no one else fulfils the criteria. BN contributed to study design, data collection, analysis, interpretation, drafting, and revising the manuscript. AB, JH, RM, LI, KM contributed to study design, interpretation, and revising the manuscript. All authors approved the final version of the manuscript. All authors are guarantors and declare that the manuscript is an honest, accurate, and transparent account of the study being
Role of the funding source
This research was supported by a Program Grant awarded to the Screening and Test Evaluation Program (No. 633003) from the Australian National Health and Medical Research Council (NHMRC). KM is supported by an NHMRC Career Development Fellowship (No. 1029241). The funders had no role in the design or conduct of the study; in the collection, analysis, and interpretation of the data; or in the preparation or approval of the manuscript.
Ethical approval
Ethical approval for the study was obtained through the University of Sydney Human Research Ethics Committee (Project No. 2013/1002).
Conflict of interest statement
All authors declare no conflicts of interest.
Acknowledgements
We would like to thank the women who were interviewed and Ms Danielle Muscat for her help with conducting the interviews.
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