DCIS Decision Navigator

DCIS Decision Navigator

A randomized trial shows active surveillance for DCIS produces similar ipsilateral invasive breast cancer survival as immediate surgery — a landmark result that means thousands of women per year could potentially avoid surgery, but only if they can access clear information to make an informed choice.

Build a patient decision aid for women diagnosed with DCIS (ductal carcinoma in situ) that presents evidence-based information about both management options — active surveillance and surgery (lumpectomy or mastectomy) — in a structured, unbiased format aligned with international decision aid standards (IPDAS). The tool would walk patients through key considerations: what DCIS is, what the randomized trial evidence shows about surveillance outcomes, what characteristics of their specific DCIS might influence risk, how surveillance would be conducted in practice, and what questions to ask their surgeon.

The decision aid would include a values clarification exercise helping women articulate what matters most to them (avoiding surgery, avoiding recurrence risk, minimizing monitoring burden, etc.) and generate a personalized summary of their values to guide the shared decision-making conversation with their oncologist. A glossary and library of plain-language explanations would ensure medical terms like 'ipsilateral invasive breast cancer survival' are accessible.

DCIS is diagnosed in roughly 50,000 US women per year and the vast majority currently undergo surgery. If active surveillance is now a legitimate option for appropriate candidates, the information infrastructure to support that choice is urgently needed. Without a clear decision aid, most patients will default to surgery because 'cancer' triggers fear and the clinical conversation rarely has time for nuanced shared decision-making. This tool could directly change the experience and outcomes of newly diagnosed DCIS patients.

Who Is This For?

Women newly diagnosed with DCIS who need to decide between active surveillance and surgery, breast cancer surgeons facilitating shared decision-making conversations, and patient advocacy organizations supporting DCIS patients.

Skills & Tools Needed

• Health decision aid design (IPDAS methodology)
• Web development for interactive decision support tools
• Medical writing for patient-accessible breast cancer content
• Knowledge of DCIS management guidelines and trial evidence
• User testing with DCIS patient populations

Feasibility

medium — Well-validated decision aid frameworks exist and can be adapted; the main effort is rigorous medical content review, values clarification exercise design, and user testing to ensure the tool doesn't inadvertently bias toward one option.

Inspired by: Active Surveillance for DCIS Moves Closer to Standard Option but 'Not Quite There'