Diving Into the Gray Zone: A Patient Perspective on What Patient-Centered DCIS Care Really Means

Area of Science:

• Oncology
• Patient Experience Research
• Health Communication

Background:

• Ductal carcinoma in situ (DCIS) is diagnosed as "Stage 0" breast cancer, often leading to invasive treatments like surgery and radiation.
• Current medical knowledge suggests many DCIS cases may not progress to invasive disease, but reliable predictive tools are lacking.
• Patients face significant uncertainty when deciding on treatment due to the inability to differentiate indolent from progressive DCIS.

Purpose of the Study:

• To examine how communication, risk assessment, and decision-making support influence the patient experience with DCIS.
• To offer recommendations for improving transparency, shared decision-making, and patient support in DCIS care.
• To highlight the need for better tools to predict DCIS progression and guide treatment choices.

Main Methods:

• A patient perspective approach, drawing on lived experience with a DCIS diagnosis.
• Analysis of variability in language, risk communication, and decision-making support.
• Reflection on the emotional and practical consequences of navigating a DCIS diagnosis.

Main Results:

• Variability in provider communication and educational resources significantly shapes patient experience and decision-making.
• Lack of clear risk stratification tools forces patients into difficult choices amid uncertainty.
• The patient journey is marked by emotional distress and practical challenges due to diagnostic ambiguity.

Conclusions:

• Improving DCIS care requires enhanced research for risk stratification and a commitment to empathetic communication.
• Accessible, balanced educational resources are crucial, especially for underserved populations.
• Developing infrastructure for informed, value-aligned patient decisions is essential for managing DCIS uncertainty.