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Dense breast notifications are informative but hard to read and understand


This research is relevant for:

Unhecked Breast cancer survivors

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Checked Women over 45

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Checked Special populations: Women with dense breasts, women who receive dense breast notifications on their screening results

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Some states offer women dense breast notifications that are meant to explain that dense breasts are risk factors for breast cancer and can hide cancer on mammograms, and to identify appropriate supplemental screening options. But recent research found that this information is often not easy to read or understand, which questions the usefulness of the documents. (6/7/16)


STUDY AT A GLANCE

What is this study about?

In almost half of the states in the U.S., some or all women receive a dense breast notification (DBN) with their screening mammograms. But do women understand what these notifications are trying to say?

Why is this study important?

Information that is difficult to read or understand may fail its purpose to inform women about dense breasts, whether they may have them, and important alternatives to mammograms.

Study findings: 

  1. The majority of DBNs explain that breasts with dense tissue can hide cancer on mammograms, and that they are linked to an increased risk of breast cancer. The notifications also identify other options for screening dense breasts. But while these DBNs include all of this information, researchers found that the documents are hard to understand, and the majority of them were written at a reading level that is too high.

What does this mean for me?

This research indicates that dense breast notifications, while informative, are difficult to read and understand. Women who have any questions about their DBN or screening results should never hesitate to contact their health care provider for clarification, because it is important that all patients understand information that is presented to them.

Questions to ask your health care provider:

  • What does having dense breasts mean for me?
  • How can I lower my breast cancer risk?
  • I have a dense breast notification and carry a mutation in a gene that increases cancer risk. How does this affect my screening options?
  • What other screening methods can I use?
  • I live in a state that does not provide a dense breast notification with my screening result. How do I know if I have dense breasts?
  • Who do I contact if I do not understand what my Dense Breast Notification says?

IN DEPTH REVIEW OF RESEARCH

Study background:

Dense breasts can hide cancer on mammograms, and they are a risk factor for cancer. Because of this, almost half of U.S. states include information on dense breasts with mammogram results, because it can help women make informed decisions about what to do next.

Nancy Kressin and her colleagues from the Boston University School of Medicine published a letter in the journal JAMA regarding their efforts to determine whether information included in DBNs is readable and understandable.

Population(s) looked at in the study:

The researchers studied the dense breast notifications from all states that issue them. They assessed content, readability (using two tests that measure the reading grade level of text) and understandability (using the Patient Education Materials Assessment Tool that measures patient understanding).

Study findings: 

  1. 24 of 50 U.S. states require that women’s screening results also include a dense breast notification. The researchers studied the DBNs of 23 of these states.
    • 7 of 23 states require that all women receive generic information about breast density.  Women with dense breasts get additional information on breast density.
    • 16 of 23 states provide information about breast density only to women who have dense breasts.
  2. All of the 23 states included in the study provide dense breast notifications that mention the potential for dense breasts to hide cancers on mammograms.
  3. 18 of 23 states provide dense breast notifications that include information about the increased risk of breast cancer that is linked to dense breasts.
  4. 14 of 23 states provide dense breast notifications that include information about supplemental screening for women with dense breasts.
  5. On average, DBNs reviewed are written at a 10th grade reading level. This is higher than the recommended reading level (7th-8th grade) for patient information.
  6. All dense breast notifications reviewed have very low understandability scores.

Limitations:

While this study focused on the text included in dense breast notifications, it did not have any data on related outcomes. Did the women from states with dense breast notifications have less anxiety or more cancer detected? So while the researchers know about the readability and understandability of dense breast notifications, they do not know how these factors affect women after they receive their mammogram results. Further research is needed to determine whether the current low reading level of dense breast notifications improve a patient’s ability to make decisions about breast cancer screening.

Conclusions:

This study indicates that the reading level of dense breast notifications is too high, making them hard to understand. Another study is needed to see the effect this has on outcomes, but as the study authors wrote, “Efforts should focus on enhancing the understandability of dense breast notifications 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.” If dense breast notifications are hard to read and understand, women may glance over and disregard the information, even though it is information that they should know about themselves. If a patient is having difficulty understanding her dense breast notification or any screening result, she should not hesitate to contact a health care provider for further clarification.

It is important to remember that dense breasts are just one indication for increased breast cancer screening. Women with a family history of cancer, a mutation in BRCA1/2 or other gene that increases breast cancer risk, or a personal history of breast cancer should discuss appropriate breast cancer screening with their health care providers. 

Posted 6/7/16

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References

Kressin NR, Gunn CM, Battaglia TA. “Content, Readability, and Understandability of Dense Breast Notifications by State.” JAMA. April 26, 2016, Volume 315, Number 16, 1786-788.

 

Related Information and Resources

FORCE Information:  Breast Screening 

Be Empowered Webinar: High-risk Surveillance for Breast Cancer 

 

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