Investigators have discovered that reliable educational materials about breast cancer surgery may be difficult to access and are often presented at much higher reading levels than recommended, according to the findings of two new studies presented by Brennan et al and Satarasinghe et al at the American College of Surgeons (ACS) Clinical Congress 2023. The results may shed light on the significance of developing more accessible materials for patients with breast cancer.
Background
Breast cancer is the most common nonskin cancer diagnosed in female patients in the United States.
Patients with breast cancer may be tasked with making complex decisions about surgery and treatment options, forcing many of them to turn to online materials to help them make their choices.
“In breast surgery, there are a lot of decisions patients have to make, and sometimes giving a choice to a patient can be really overwhelming, especially if there’s not a one-size-fits-all solution,” explained co–study author Emily Palmquist, MD, Assistant Professor in the Department of General Surgery at the University of Washington School of Medicine and a breast surgeon at the University of Washington Medical Center. “As much as we as surgeons try to educate patients, there is limited time, and patients can only absorb so much in a visit. Some patients may turn to other resources online, such as blogs and nonvalidated sources that they may find easier to read and understand—which raises concern about the accuracy of materials patients may be accessing,” she added.
Assessing Readability in Breast Surgery Education Materials
In the first study, Dr. Palmquist and her colleagues reviewed English-language patient education materials describing breast-conserving surgery, mastectomy, and lymph node surgery from National Cancer Institute (NCI)-designated Comprehensive Cancer Center websites. They then examined the materials’ readability using five validated assessment scales—the Flesch-Kincaid Grade Level, Gunning-Fog Index, Coleman-Liau Index, Simple Measures of Gobbledygook Index, and Automated Readability Index—that utilized parameters such as word count and sentence difficulty.
The investigators found that patient education materials were publicly available on 78% of NCI-designated Comprehensive Cancer Center websites. However, the average readability score of these materials, defined as the grade level required to understand the written content, was 11.6 (range 10.1–13.9) across five scales. This score was higher than National Institutes of Health (NIH) recommendations as well as national literacy levels in the United States, where 19% of U.S. adults currently possess low literacy skills.
“Breast surgeons are often one of the first providers that patients meet when they are diagnosed. Even if we do a fantastic job at patient education in our eyes, patients often return home not having asked the questions that they might have asked when they were in a more comfortable environment,” stressed first study author Sarah Brennan, a fourth-year medical student at the University of Washington.
The Vast Landscape of Online Materials
In the second study, investigators evaluated the wide variety of materials available online about breast surgery from accredited organizations or foundations. Using validated tools to help them assess the quality and tone of information as well as the overall reading level, the investigators then input the search phrase “breast cancer surgery” and “mastectomy” into the three most popular search engines (Google, Yahoo, and Bing) to analyze 108 unique resources for readability, bias, quality, and tone.
The investigators revealed that most of the website content exceeded the recommended sixth-grade reading level (most were found to require an average 10th grade reading level) and had information deemed either of fair or poor quality. Further, the websites on breast cancer surgery scored below average for quality evaluation and at least two to three sentences per website had stigmatizing language.
“In addition, most of the tones that were prominent were negative in character. Fear-[inducing], analytical, tentative, and sad were the four most prominent tones,” expressed lead study author Praveen Satarasinghe, MD, MBA, a third-year resident physician in general surgery at the Crozer-Chester Medical Center. “It’s surprising that for such a delicate topic like breast cancer, the first piece of information a patient may see online is filled with a negative tone,” he noted.
“This study highlights the need to provide educational services on a more accessible level for all patients,” highlighted senior study author Chantal Reyna, MD, FACS, FSSO, Section Chief of Breast Surgical Oncology at Loyola University in Chicago. “Our focus needs to be on making sure that there is ease of readability in the materials we hand out, and that the tone of the materials doesn’t enhance that fear that many patients may experience in an already stressful time,” she added.
Conclusions
“Many patients may turn to the wide variety of resources available online. I think these findings highlight the importance of making sure the resources that are coming from cancer centers are meeting the needs of patients,” Dr. Brennan underscored.
“In the future, it will be interesting to see how we can shift the resources to capture a positive tone to impact patients who want to seek treatment for breast cancer. I think by going into the details, we can see that there’s clearly a problem that needs to be addressed,” concluded Dr. Satarasinghe.
