By Elizabeth Holtsclaw and Aaron Kruse-Diehr
Over the past two decades, Kentucky has made remarkable progress in increasing colorectal cancer screening. According to the Kentucky Cancer Registry, in 2001, Kentucky was ranked 49th out of 50 in colorectal cancer screening compared to all other states, with just over one third (34.7 percent) of the age-eligible population ever having a colonoscopy or sigmoidoscopy.
However, by 2016, the screening rate increased to 70 percent, and Kentucky was ranked 17th in the nation, resulting in significant reductions in incidence and mortality due to colorectal cancer. A driving factor: the American Cancer Society’s 80% in Every Community, a campaign to ensure that all populations have equitable access to colon cancer screening to the benefits of prevention and early detection.
One key component to reaching every community is through at-home stool-based screening options. For average risk populations with no symptoms, at-home stool-based tests are critical to ensuring equitable access to screening. Research shows that if offered all available options for screening, patients are more likely to get screened for colorectal cancer. Furthermore, a national survey published in May of 2021 in Cancer Prevention Research revealed that, overall, patients prefer stool-based tests to colonoscopy.
At-home screening options, such as the fecal immunochemical test (FIT) kit, are especially critical in rural areas, where patients may have to travel far distances for colonoscopy or wait for available appointments due to a lack of providers. Nevertheless, when patients are given at-home stool-based tests, they may find the medical instructions difficult to understand, making it unlikely that they complete the FIT kit appropriately.
Directions such as “cover the grooved portion of the sample probe completely with the stool sample” is not in line with commonly accepted health literacy goals of presenting health-related materials at a sixth-grade reading level. The American Cancer Society identified that the confusing instructions given in FIT kits was a substantial barrier for populations with low health literacy and visual impairment.
With these barriers in mind, in 2014, Elizabeth Holtsclaw of the American Cancer Society created an audio supplement card concept to go along with the FIT kit. Inspired by musical greeting cards, she took the instructions for a FIT and simplified them even more. In 2015, she met Mike, a colon cancer survivor from Lexington. Mike did not have health insurance at the time of his colon cancer diagnosis or a primary care provider, but when he attended a health fair outreach event and given a FIT, he found that he had stage 3 colon cancer. His oncologist told him that if he had not had the FIT and found his cancer when they did, he would have likely died within the year.
Because of this experience, Mike agreed to provide his picture and voice to the first ever “talking card.” When the card is opened, Mike’s voice begins playing: “Hi, this is Mike from Lexington, Kentucky, and I’m a colon cancer survivor. The best way to stop colon cancer is to find it early, and the FIT test can help.”
Born and raised in Lexington, Mike’s voice and cadence reflect the local Kentucky population. The goal of the card was to have Mike directly speak to the person in their home and make them feel connected to their test. After explaining the importance of colon cancer screening, Mike continues by explaining in simplified language step-by-step instructions for using the specific brand of FIT. People can listen to the card as many times as needed to ensure they have followed the instructions properly.
In partnership with the Kentucky Cancer Consortium, the first batch of cards were printed in 2017. Shortly thereafter, the Kentucky Cancer Program and Kentucky CancerLink partnered with the American Cancer Society and Kentucky Cancer Consortium to conduct a small pilot to test the effectiveness of the talking cards. The team wanted to know if the cards were well received and if they helped community members complete their screening. Findings from the initial evaluation were promising, revealing that patients found the talking cards helpful and that they increased FIT completion rates, particularly when paired with patient navigation from Kentucky CancerLink.
In 2019, Holtsclaw partnered with University of Kentucky College of Public Health assistant professor Aaron Kruse-Diehr to begin formal research projects with the cards. Currently, two projects are underway. One is examining patients’ perceptions of the cards in a cross-sectional survey of over 500 patients in eastern Kentucky, and a second includes a partnership with five African American churches in Louisville to develop a version of the talking card that reflects the values, images and culture of African American Kentucky residents. Plans include creating different versions of the talking card for other racial/ethnic groups as well as cards presented in different languages.
To read the Kentucky Cancer Consortium report on the effectiveness of the talking cards, visit medicalnews.md. To read the report in Cancer Prevention Research visit https://bit.ly/3twHtgA.
– Elizabeth Holtsclaw, MA, is a cancer control strategic partnerships manager at the American Cancer Society North Central Region. Aaron Kruse-Diehr, PhD, is an assistant professor in the department of Health, Behavior & Society at the College of Public Health at the University of Kentucky.