Treatment decision-making in ductal carcinoma in situ: A mixed methods systematic review of women's experiences and information needs

Objective: Decision-making in ductal carcinoma in situ (DCIS) is complex due to the heterogeneity of the disease. This study aimed to understand women's experience of making treatment decisions for DCIS, their information and support needs, and factors that influenced decisions.

Methods: We searched six electronic databases, conference proceedings, and key authors. Two reviewers independently applied inclusion and quality criteria, and extracted findings. Thematic analysis was used to combine and summarise findings.

Results: We identified six themes and 28 subthemes from 18 studies. Women with DCIS have knowledge deficits about DCIS, experience anxiety related to information given at diagnosis and the complexity of decision-making, and have misconceptions regarding risks and outcomes of treatment. Women's decisions are influenced by their understanding of risk, the clinical features of their DCIS, and the benefits and harms of treatment options. Women are dissatisfied with the decisional support available.

Conclusions: Informed and shared decision-making in this complex decision setting requires clear communication of information specific to DCIS and individual's, as well as decision support for patients and clinicians.

Practice implications: This approach would educate patients and clinicians, and assist clinicians in supporting patients to an evidence-based treatment plan that aligns with individual values and pReferences.