Post-mammogram letters often confuse more than they they help

Knowledge is power, right?

That’s the rationale behind new state laws and possible federal legislation requiring breast imaging centers to alert women if they have dense breasts — breast tissue that is relatively less fatty and more likely to look white on a mammogram, hiding tumors.

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Thanks in part to earlier diagnoses and advances in treatment, the chances of surviving some of the most common types of cancer have increased.

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For more than a decade, each patient getting a mammogram has received a written report explaining her result. Legislation that was introduced by Rep. Rosa DeLauro (D-Conn.) during the last congressional session and is expected to be reintroduced would require that information about each woman’s breast density be added to these “lay” letters. But there’s no evidence that such letters significantly improve women’s understanding of their results and follow-up plans.

The most recent large survey on this subject, conducted more than a decade ago, involved nearly 1,000 San Francisco-area women with abnormal mammograms. In telephone interviews, nearly 40 percent of those women reported that their results were “normal.” Even more concerning, the survey found that only half of the 300 women with the most worrisome results — those deemed “suspicious” or “highly suspicious” for cancer — understood they had had an abnormal mammogram. Women who had been told their findings solely by letter were far less likely to voice a correct understanding of their result than were women who had also been informed in person or by telephone.

I have been analyzing the letters that many centers send to patients and interviewing women about their experiences learning of their results, under the auspices of an American Cancer Society Career Development Award. My colleagues and I have found that many women remain confused and anxious about their results, despite receiving a layperson letter.

One reason for this disconnect may be the way the letters are written. In a study whose results were published in the Journal of Women’s Health in 2011, we found that the sample letters that many centers use as a template were riddled with jargon, such as the word “benign,” which focus group participants told us they needed to look up. Virtually all of the 43 letters we studied used indirect language and vague terms, such as “your mammogram shows the need for further evaluation,” instead of “you need to come back,” or “pathologic analysis” instead of “lab studies.” On average, the letters we analyzed were written at a 10th-grade level. But communication researchers usually recommend that health materials be written at no higher than a sixth-grade level, since one out of five U.S. adults reads at the fifth-grade level or below.

The American College of Radiology has recently updated the sample letters it posts on its Web site, using slightly more straightforward language. (Using the Microsoft Word readability tool, I found that the ACR’s current sample letter about an incomplete mammogram result is written at an eighth-grade level).

In focus groups, women told us they wanted to get their mammogram results verbally, from a doctor, instead of just through a letter. But most of the women in our focus groups said no doctor had called them — and they lambasted both the letters they had received and the sample letters we showed them.