Improving person-centred communication about ductal carcinoma in situ


Decades of research demonstrate poor outcomes linked to unsatisfactory communication among women diagnosed with and treated for DCIS. We aimed to generate insight on how to improve patient-centred care for women with DCIS.

Key Findings

  • Our scoping review (51 studies, 1997-2016) identified no interventions aimed at women or clinicians to improve DCIS discussions [Bre Ca Res Treat 2018;168:579-92].
  • Interviewed 35 women who had DCIS from across Canada, who said the physicians they saw used conflicting terms, failed to distinguish DCIS from invasive breast cancer and did not address questions, causing confusion about whether they had cancer and why they needed invasive treatment, and long-lasting anxiety [BMC Cancer 2020;20:364].
  • Interviewed 46 clinicians (general surgeons, surgical oncologists, radiation oncologists, medical oncologists, nurses, nurse practitioners), who said that they struggled to explain DCIS to patients given a favourable prognosis but need for treatment, noting a lack of DCIS-specific patient information. This also revealed that physicians differed in their own beliefs about whether DCIS was cancer or should be referred to as such [Health Expect 2020;23:106-14]
  • Analysis of online DCIS patient information resources found that most used many cancer-related terms for DCIS and failed to distinguish it from invasive breast cancer [Bre Ca Res Treat] 019;177:295-305].
  • Generated consensus among a pan-Canadian panel of 27 women who had DCIS and 29 clinicians on point-of-care strategies to improve person-centred DCIS care DCIS. A key recommendations was to develop non-cancer nomenclature for low-risk DCIS and accompanying clear language, a strategy shown to reduce anxiety for other types of cancer with indolent forms [Bre Ca Res Treat 2019;174:561-70].


We are in the process of gathering evidence to generate recommendations on DCIS labels and language preferred by both affected women and clinicians, that we will promote by sharing broadly with patient advocacy groups, professional societies and nomenclature agencies.