What question did this study set out to answer?

This analysis aims to understand the patient-reported outcomes related to knowledge, risk perception, and decision-making among women with DCIS and atypical breast lesions.

February 22, 2026

Abstract PS1-02-01: Knowledge, risk perception, and decision making in patients with a history of ductal carcinoma in situ (DCIS) or atypical breast lesions: a secondary analysis from the PORTAL Study

Key Result

Women with ADH/LIN or DCIS report high knowledge (67-77%), shared decision-making (63-77%), and low decision regret (10-12/100), supporting active monitoring acceptability.

Key Points

This analysis aims to understand the patient-reported outcomes related to knowledge, risk perception, and decision-making among women with DCIS and atypical breast lesions.
Conducted secondary analysis from the PORTAL Study, a multicenter cross-sectional survey.
Compared patient-reported outcomes between women receiving guideline concordant care for DCIS and those undergoing active monitoring for atypical lesions.
Utilized various validated scales to assess fear, understanding, decision quality, and involvement in decision-making.
903 participants included; 538 in the DCIS group and 365 in the atypical lesions group.
Mean knowledge of breast lesions was 77% for the DCIS group and 67% for the atypical lesions group.
84% of women with DCIS received treatment congruent with personal goals; low regret reported in decision-making.

Structured PICO

Do patients with atypical breast lesions undergoing active monitoring have similar patient-reported outcomes regarding fear, knowledge, and decision quality compared to patients with DCIS receiving guideline concordant care?

Population

903 patients with a history of ductal carcinoma in situ (DCIS) or atypical breast lesions (e.g., atypical ductal hyperplasia [ADH], lobular intraepithelial neoplasia [LIN]). 538 underwent guideline concordant care for DCIS; 365 underwent active monitoring for ADH/LIN.

Intervention

Active monitoring (AM) for atypical breast lesions (ADH/LIN)

Comparator

Guideline concordant care (GCC) for DCIS

Outcome

Patient-reported outcomes including fear of invasive breast cancer (QLACS), disease understanding and decision quality (BCS-DQI-S1/3, SURE scale, Decision Regret Scale [DRS], and Control Preferences Scale [CPS])patient reported

Women with atypical breast lesions undergoing active monitoring and those with DCIS receiving guideline-concordant care report high levels of knowledge, goal-concordant care, and involvement in shared decision-making, suggesting active monitoring is acceptable.

Main Result

Absolute Event Rate: 0% vs 0%

Abstract

Abstract Background: The COMET trial demonstrated that active monitoring (AM) is not inferior to guideline concordant care (GCC) in patients with low-risk ductal carcinoma in situ (DCIS), with comparable rates of ipsilateral invasive breast cancer (iBC) and quality of life outcomes. Similarly, patients with atypical breast lesions have an increased risk of iBC and are managed with an AM strategy which could serve as a proxy for future omission of surgery in low-risk DCIS. Acknowledging that acceptance of treatment deintensification is likely linked to patient preferences, understanding, and risk perception, this analysis assessed these patient-reported outcomes (PROs) among patients with atypical breast lesions and DCIS. Methods: In this secondary analysis of the Patient-reported Outcomes after Routine Treatment of Atypical Lesions (PORTAL) Study - a multicenter cross-sectional survey study - we compared PROs from women with DCIS who received GCC, to women with high-risk breast lesions (e.g., atypical ductal hyperplasia ADH, lobular intraepithelial neoplasia LIN) who underwent AM. We report on participants’ fear of invasive breast cancer (using Quality of Life in Adult Cancer Survivors QLACS), and disease understanding and decision quality (using Breast Cancer Surgery Decision Quality Instrument-Sections 1 and 3 BCS-DQI-S1/3, SURE scale, Decision Regret Scale DRS; and Control Preferences Scale CPS). Descriptive statistics were provided, with means and standard deviations (SD), or proportions and 95% confidence intervals (CI). Results: 903 patients were included: 538 underwent GCC for DCIS; 365 underwent AM for ADH/LIN (Table). The mean QLACS score was 1.9/4 in both groups, indicating low to moderate fear of developing iBC, with minimal impact on quality of life. The mean knowledge of the natural history of breast lesions was 77% of patients in the DCIS group and 67% in the ADH/LIN group. In the DCIS group, 84% of patients received treatment aligned with their personal goals (concordance score, BCS-DQI-S1). Mean Decision Process Scores (BCS-DQI-S3) were 77% and 63%, respectively, indicating a high level of shared decision-making. According to the CPS, 61% of patients reported a collaborative role in decision-making. On average, there was low or no regret about treatment decision (DRSs were 12/100 and 10/100). Among patients with DCIS, 81% reported no decisional conflict (SURE scale). Conclusions: These findings suggest that women with ADH/LIN and DCIS report high levels of knowledge, goal-concordant care, and involvement in shared decision-making, potentially suggesting that AM is acceptable and presents a future opportunity to de-intensify treatment for low-risk DCIS, pending results of clinical trials. Citation Format: C. Valenza, S. M. Rosenberg, K. Crowell, K. L. Schreiber, I. Bedrosian, K. S. Hughes, T. Lynch, D. Basila, D. Collyar, E. S. Frank, S. Darai, C. Lanahan, J. R. Marks, J. K. Plichta, A. M. Thompson, T. Hyslop, S. Hwang, A. H. Partridge. Knowledge, risk perception, and decision making in patients with a history of ductal carcinoma in situ (DCIS) or atypical breast lesions: a secondary analysis from the PORTAL Study abstract. In: Proceedings of the San Antonio Breast Cancer Symposium 2025; 2025 Dec 9-12; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2026;32(4 Suppl):Abstract nr PS1-02-01.

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