TOPLINE

General awareness of inflammatory breast cancer (IBC) does not translate into recognition of hallmark symptoms, according to survey responses from under 200 US adults. While more than 75% had heard of IBC, critical warning signs like skin thickening, nipple inversion, and peau d’orange were frequently missed by nearly half of participants.

METHODOLOGY

• Although IBC accounts for only 1%-5% of breast cancer cases, it contributes disproportionately to mortality, with delayed diagnosis partly driven by limited recognition of its atypical presentation. Public health messaging has historically emphasized lump detection, potentially contributing to gaps in awareness of hallmark IBC symptoms such as skin changes and inflammation.
• Researchers developed an 18-item IBC knowledge instrument through cognitive interviews with 10 patients previously diagnosed with IBC, followed by creation and refinement of survey items assessing general awareness, symptom recognition, and risk factor recognition.
• A cross-sectional online survey of 177 individuals was conducted from January 2022 to December 2025 using purposive sampling to assess IBC knowledge.
• Two preliminary exploratory indices were evaluated: Composite Awareness Score (CAS) — calculated as the sum of correct responses (range, 0-18), and Weighted Composite Awareness Score (WCAS) — applying expert-derived weights emphasizing diagnostically relevant IBC symptoms (range, 0-31).

TAKEAWAY

• Among 177 respondents, 138 (78.0%) had previously heard of IBC, yet recognition of hallmark clinical features was limited, with skin thickening missed by 89 respondents (50.3%), nipple inversion by 87 (49.2%), peau d’orange by 76 (42.9%), and breast redness by 64 (36.2%).
• In exploratory multivariable models, being White, having a prior breast cancer diagnosis and having a mammography history were statistically significantly associated with higher CAS and WCAS scores (P < .05).
• Respondents more frequently identified a breast lump (111 respondents; 62.7%), a finding common in breast cancer overall but less characteristic of IBC than hallmark IBC symptoms.
• In unadjusted comparisons, older adults, men, rural residents, individuals with lower income or education, and those from racial and ethnic minority groups demonstrated low knowledge, with mean CAS and WCAS scores < 10 and 20, respectively.

IN PRACTICE

“These findings underscore the importance of public education that shifts awareness beyond breast lump detection to include the rapid onset of unilateral breast changes characteristic of IBC,” wrote the authors of the research letter.

SOURCE

The research was led by Anh N. Tran, PhD, MPH, Duke Consortium for Inflammatory Breast Cancer, Duke Cancer Institute, Durham, North Carolina, and Gayathri R. Devi, PhD, MS, Department of Surgery, Medical University of South Carolina, Charleston. It was published online on August 27 in JAMA Network Open.

LIMITATIONS

The study has several limitations including purposive sampling, reliance on self-reported measures, and limited generalizability due to the small sample size of 177 respondents. The CAS and WCAS require further validation in larger, more representative populations to evaluate reliability, factor structure, item discrimination, test-retest performance, and empirical weighting. The risk factor domain included broader breast cancer risk factors for educational and exploratory purposes and should not be interpreted as an IBC-specific risk prediction model. The exploratory design limits the interpretation of statistical significance testing.

DISCLOSURES

The study received support from the Duke Cancer Institute Community Outreach and Engagement, Equity Seed Grant as part of the NCI-P30 Cancer Center Support Grant (Grant No. P30 CA014236), Medical University of South Carolina Institutional funds, Duke Advanced Practice Provider Leadership Institute, and Duke AHEAD/Duke Academy for Health Professions Education and Academic Development Education Grant. Samantha M. Thomas, MS, disclosed receiving grants from the National Institutes of Health (NIH) or the National Cancer Institute for statistical support during the conduct of the study. Jennifer K. Plichta, MD, disclosed receiving support from Breathe for a clinical trial paid to the institution and support from SRG for a clinical trial paid to the institution outside the submitted work. Devi disclosed receiving grants from the NIH during the conduct of the study and has intellectual property related to the survey. Additional disclosures are noted in the original article.

This article was created using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.