Funding

Canadian Cancer Society

Aim

About 7,000+ Canadian women develop ductal carcinoma in situ (DCIS) annually. Given its potential “pre-cancerous” nature but overall favourable prognosis, communicating about DCIS is challenging for both physicians and women. Physicians find it difficult to explain DCIS’s low risk yet justify treatment, and women with DCIS often report confusion and anxiety leading to poor physical and psychological outcomes, and reduced quality of life. Building on our previous research, we aim to generate insight on labels and language that can improve person-centred communication about DCIS.

Methods

1. Review published research on preferred labels and language for DCIS and the underlying rationale, and for other cancers where labels/language were already been updated: low-grade squamous intraepithelial lesion (LSIL), urothelial neoplasia of low malignant potential (UNLMP), low-grade thyroid cancer, and low-grade prostate cancer to compile preferences and rationale for labels and language.
2. Informed by the review, interview diverse patients who had these types of cancer and clinicians of different specialties across Canada to explore preferred labels/language and underlying rationale, and
3. Establish consensus on optimal DCIS labels and language using a two-round online Delphi survey.

Impact

We will use share the results with cancer-naming agencies, medical societies, and patient advocacy groups so that they can promote or adopt use of the non-cancer names. Even if not formally adopted by cancer-naming agencies, use of preferred labels/language may support person-centred communication about DCIS, reduce anxiety among affected women, and improve their clinical and psychological outcomes.

For more information on research interviews:

Click HERE for patient information sheet

Click HERE for clinician information sheet