Content, Readability, and Understandability of Dense Breast Notifications by State

Along with their screening mammogram results, women in nearly half of US states also receive notifications of breast density, a result of legislation intended to assist in making personalized decisions about further action. Dense breasts can mask cancer on mammography (masking bias), and are an independent cancer risk factor, but evidence does not yet indicate whether or what supplemental screening is appropriate. Rather, risk stratification is proposed to determine who may benefit from supplemental screening (eg, magnetic resonance imaging for women at high risk).^1,2

The text of dense breast notifications (DBNs) may affect women’s ability to understand their message. We examined DBN characteristics across states to inform future policy.

We reviewed the laws requiring DBNs for states with legislation effective as of January 1, 2016 (except Delaware, whose legislation language was not sufficiently detailed to analyze DBN content). In most states, the legislation specified the exact language for DBNs. We compared the content, readability, and understandability of DBNs across states. We noted the mandates and required recipients stated in the laws and whether the DBNs addressed masking bias, density as a cancer risk factor, and supplemental screening. We measured readability using the Flesch-Kincaid reading grade level in MS Word (range: theoretical lower bound, −3.4; no upper bound) and the Dale-Chall readability grade score (range, ≤4 to ≥16).³ Understandability was assessed using the Patient Education Materials Assessment Tool (PEMAT; range, 1% to 100%).⁴ We obtained the proportion of adults in each state lacking basic prose literacy skills from available statistics,⁵ comparing DBN Flesch-Kincaid readability with state population literacy level.

Twenty-four states require DBNs as of January 1, 2016; we analyzed all but Delaware. Most states (n = 21, 91%) mandate specific language (Table); 4 states (17%) only mandate required components. Seven states (30%) require a generic DBN for every woman receiving a screening mammogram, whereas all others only require notification to those with dense findings. All DBNs mention masking bias, 18 (86%) mention the association with increased cancer risk, and 14 (67%) mention supplemental screening as an option, advising women to consult their physician. Of 14 DBNs requiring mention of supplemental screening, 6 (43%) inform women that they might benefit from such screening; 4 mention specific modalities.

Flesch-Kincaid readability levels ranged from grades 7 to 19.4 (mean, 10.5), most exceeding the recommended readability level (grades 7-8); about 20% of the population reads below a grade 5 level.⁵ Dale-Chall readability grade scoring³ produced slightly higher scores overall (grade range: 9-10 to 13-15). All DBNs scored poorly on understandability (PEMAT; range, 11%-33%). There was widespread discordance between states’ DBN readability and corresponding basic literacy levels (Figure). Only 3 states’ DBN readability level was at the grade 8 level or below; some of the highest readability levels occurred in states with the lowest literacy levels.

We found wide variation in 23 states’ DBN content, with most having readability at the high school level or above, poor understandability, and discontinuity with states’ average literacy. Such problems may create uncertainty for women attempting to make personalized decisions about supplemental screening and may exacerbate disparities in breast cancer screening related to low health literacy.⁶ Many DBNs appropriately encourage discussions and shared decision making between patients and physicians. The lack of evidence regarding supplemental screening may contribute to variation in DBN content and to physician difficulty explaining results and conducting personalized risk assessments. These findings add to other expressed concerns regarding DBN reporting laws.²

This analysis was limited by its focus on DBN text, with no data on relevant outcomes (anxiety, supplemental screening usage, or additional cancers detected). State-level literacy data were not available by sex; however, sex differences in literacy have not been detected.⁵

Efforts should focus on enhancing the understandability of DBNs so that all women are clearly and accurately informed about their density status, its effect on their breast cancer risk, and the harms and benefits of supplemental screening.

Correction: This article was corrected for errors in the Table, Figure, and text on May 12, 2016.

Corresponding Author: Nancy R. Kressin, PhD, Veterans Affairs Boston Healthcare System, Boston University School of Medicine, 801 Massachusetts Ave, Boston, MA 02118 (nkressin@bu.edu).

Author Contributions: Drs Kressin and Gunn had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: All authors.

Acquisition, analysis, or interpretation of data: Kressin, Gunn.

Drafting of the manuscript: Kressin.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Gunn.

Administrative, technical, or material support: Gunn, Battaglia.

Study supervision: Gunn, Battaglia.

Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Dr Kressin is supported in part by a Research Career Scientist award (RCS 02-066-1) from the Department of Veterans Affairs, Health Services Research and Development Service. Dr Battaglia is the chair elect of the American Cancer Society of New England. No other disclosures are reported.

Additional Contributions: We thank Amanda West, MPH (Boston University School of Medicine), for her assistance with data collection. She received no compensation for her contribution besides that from her employer.