Credit Taylor Glascock for The New York Times
About 40 percent of women who have mammograms are found to have dense breast tissue, a normal finding that can make it harder to detect cancer. But many of these women receive letters in the mail about the finding that can be hard to decipher, a new study found.
“Twenty percent of the population only reads at an eighth-grade level, and many more don’t read at a much higher level than that,” said Nancy R. Kressin, one of the study’s authors who is a professor at Boston University School of Medicine and a senior researcher at the Veterans Affairs Boston Healthcare System.
“For many women, these notifications are not going to be easy to read” and might even be alarming, she said. “We’ve talked to some women who received these letters, and their reaction was ‘Oh my God, I have cancer.’ ”
Dense breast tissue means that a woman’s breasts have more connective and fibrous tissue than usual. Dense breasts both increase the risk of breast cancer and make it less likely that tumors will be seen on a mammogram, but having dense breasts does not mean a woman has cancer.
The study, published as a letter in JAMA, analyzed the notification letters sent out in 23 states and found that many use such complex language that patients need a college degree to understand them. The letters sent out in New Jersey and Connecticut were written at a postgraduate degree level, the report found. Yet only 12 percent of American adults have proficient health literacy, according to the National Assessment of Adult Literacy.
For years women were not routinely informed of the finding. Now, 26 states have laws on the books that require mammography testing facilities to tell women who have the breast cancer imaging scans if they have dense breast tissue as part of their results, according to Nancy Cappello, who founded Are You Dense?, a nonprofit organization that educates the public about the risks of dense breast tissue.
She acknowledged that the notification letters, which are crafted during the legislative process and are different in every state, may be complex but said they are meant to trigger a discussion between the patient and her doctor.
The notifications were “never intended to replace conversations, but to enhance them,” said Dr. Cappello, who was given a diagnosis of advanced breast cancer in early 2004, weeks after receiving a “normal” result from a mammogram. After her diagnosis, she learned that she had dense breast tissue. But although she had been having mammograms every year for over a decade, she was never informed she had dense breasts and that the scans were less reliable as a result.
She called the study “shortsighted” because it evaluated several sentences of a letter in isolation, “without assessing the readability of the entire report.”
“Why don’t the authors question the readability levels of all medical reporting results that patients receive?” Dr. Cappello asked.
The new analysis in JAMA measured the readability and understandability of notification letters and found that most were written at a level higher than the recommended seventh- or eighth-grade readability level, and many were at a high school or college readability level.
All of the letters informed women that dense breasts can mask cancer on mammography. Most also informed women that dense breasts are associated with an increased cancer risk and mentioned the option of getting screened by another method, suggesting the woman talk to her doctor.