Labels, Language and Other Strategies to Improve Communication About Lowest Grade Ductal Carcinoma in Situ: Qualitative Interviews With Women and Physicians.

OBJECTIVE

Women diagnosed with ductal carcinoma in situ (DCIS) and clinicians have reported challenges in communication about DCIS, contributing to women's confusion and anxiety. This study explored how to improve communication about DCIS including alternative labels, language and other strategies.

METHODS

We interviewed women from July 2024-January 2025 who had DCIS and clinicians from across Canada, and analyzed themes using Communication Accommodation Theory.

RESULTS

Participants included 12 women (67% aged 45 to 65, 58% non-White) and 16 clinicians of diverse specialties (87% women, 63% mid career). Women and clinicians held divergent views about an alternative label for DCIS. Women preferred "abnormal cells" over "DCIS" to avoid the word cancer. Clinicians preferred precursor labels (e.g., stage 0 cancer, pre-cancer) over abnormal cells and felt confident explaining DCIS using precursor labels, which triggered women's concern. Women and clinicians held convergent views on how to improve communication about DCIS including language (use lay language rather than technical jargon, explicitly distinguishing DCIS from invasive breast cancer, address the risk of spread beyond the breast ducts and mortality) and other strategies (take time to educate women, using visual aids, providing take-home information, tailoring pathology reports to patients).

CONCLUSIONS

This study adds to prior research that identified challenges to communication about DCIS but did not fully examine how to improve communication. Several implications emerged for policy (consider formal label change) and practice (share communication aids or other tools with clinicians and patients). Future research should develop and evaluate the impact of these approaches.