Marianne Pearson, MSW, LCSW, was surprised to learn she had a large, cancerous polyp in her rectum. Her gastroenterologist had found it during a routine screening colonoscopy last December.
Her official diagnosis: stage I rectal cancer.
Pearson, who was about to turn 51, had always been diligent about regular health screenings. Prior to her diagnosis, she considered herself average risk for colorectal cancer (CRC). She had no significant family history nor any concerning symptoms that would indicate trouble.
Now in remission, Pearson wonders if a colonoscopy even a year earlier, when she was initially referred, could have spared her a cancer diagnosis altogether. Perhaps more importantly, the experience hit home that people should not delay CRC screening.
But that’s what many people are doing.
Data indicate that more than 40% of Americans are skipping standard CRC screening. And the rationale, research shows, goes beyond the well-known practical issues of insurance coverage, access, and expense.
A major reason people avoid CRC screening appears to be rooted in their negative emotional associations with the disease and the tests that screen for it.
People often view CRC and its screening tests as frightening and disgusting, and these feelings can lead to denial and defensiveness, said Steven M. Tovian, PhD, a clinical and health psychologist at Northwestern University’s Feinberg School of Medicine in Evanston, Illinois.A large body of research supports this idea that a key barrier to CRC screening is psychological. Instead of dealing with the fear head on, it may be easier for people to put off screening and “hope for the best,” said Pearson, senior director of patient navigation at the Colorectal Cancer Alliance.
More Options, More Decisions
In 2021, the US Preventive Services Task Force updated its CRC screening guidelines, recommending adults start screening at age 45. The Task Force lists several options, including stool-based tests (eg, high-sensitivity guaiac fecal occult blood test [gFOBT]), fecal immunochemical test (FIT), and stool DNA tests, as well as direct visualization tests like colonoscopy, flexible sigmoidoscopy, and CT colonography.
However, CRC screening rates reached only 59% that year, according to data from the National Health Interview Survey. The target percentage for screening in the US population is 68.3%.
Some populations fare worse than others. The 2021 data indicated that screening is lowest among the uninsured (21%), recent immigrants (29%), as well as younger individuals ages 45-49 years (20%). However, the low rates among younger people is not surprising, given the recent change to the screening age.
CRC screening rates also vary by test. Colonoscopy remains the most common modality, with 54% of Americans up to date in 2021, whereas only 10% had a routine stool test, such as FIT or FOBT.
Despite being the most popular approach, colonoscopies present practical challenges that may still dissuade people. The invasive procedure requires a day of prep plus a day to undergo the screening itself. People may need to take time off work and will need someone to take them to and from the procedure. Plus, the procedure may be pricey depending on a person’s insurance coverage.
However, with less invasive, less time-consuming, and less expensive options available, CRC screening rates should theoretically be higher.
Not only are there more options for CRC screening, these options are much more accessible than they used to be, said Claire Conley, PhD, licensed clinical psychologist and assistant professor of oncology at Georgetown University Medical Center, Washington, DC.
“Instead of having to prepare for a colonoscopy the day before and going into a medical setting for an invasive procedure, people can do screening on their own time, in the convenience of their own home,” Conley said. Given that, “we would definitely expect that to increase the number of people getting screened for colorectal cancer.”
While more screening options is a positive step, it’s also possible that some percentage of people feel overwhelmed by the options and disengage, said Conley. “When people are presented with too many options, sometimes they shut down, or decide not to decide,” she explained.
The Psychology of CRC Screening
So, what else could be behind low CRC screening rates?
Literature that goes back more than a decade explores the underlying psychological barriers that are not addressed simply by having more screening options.
A 2016 meta-analysis of 94 studies, for instance, underscored the negative perceptions associated with CRC screening. Overall, the psychological barriers focused on the embarrassment surrounding screening as well as fear about the results.
Each test came with its own caveats too. One study included in the meta-analysis found that people shied away from FIT screening because it involved “a dirty part of the body,” while others viewed the process of storing the kit and yielding a sample as unhygienic or taboo. People avoided getting a colonoscopy for many reasons, including the perceived pain, discomfort, and risk of perforation associated with the procedure.
Fear was a particular focus of these analyses. GI oncologist John L. Marshall, MD, understands why: he encounters a few dozen patients a year who delay screening out of a natural human emotion — fear. They wave it off and then regret it, said Marshall, director of the Ruesch Center for the Cure of Gastrointestinal Cancers at Georgetown’s Lombardi Comprehensive Cancer Center.
A 2010 study that was a part of that meta-analysis found that fear of having cancer — receiving a diagnosis and being treated — explained why many people avoided it. Fears about sedation, complications associated with a colonoscopy, and being a burden to family and friends also represented barriers.
Fear even led some respondents to say they would prefer to delay the diagnosis or not know — an ‘ignorance is bliss’ mentality, while others gave fatalism or faith as rationales to delay or skip screening.
A more recent study, published in 2021, highlighted similar fears about FIT screening. It found that negative ideas about CRC screening — fear of tempting fate, disgust about the tests, as well as a belief that cancer often can’t be cured — prevented people from undergoing FIT.
“If a person feels that cancer is a death sentence and treatment is not effective, they may be more afraid of screening results and less likely to get screened,” said Conley.
Research shows disgust also plays an important role.
A 2020 review and meta-analysis of 46 studies found that feelings of disgust increased CRC screening avoidance.
Another study from 2016 assessed whether perceived disgust — or the “ick” factor —affected whether people returned a FOBT kit that was sent to their homes. The findings showed that the ick factor was one of the strongest predictors of deciding not to screen. And among participants who expressed strong intentions to return their FOBT kit, only the ick factor distinguished those who returned kits from those who did not.
CRC affects an area of the body that may be off-putting, Tovian said.
“We tend to look at bodily functions as disgusting, especially the rectal area,” Tovian added. Plus, “it’s a sensitive area, both physiologically and psychologically,” and thinking about probing this area is unpleasant to most people.
The fear and disgust surrounding CRC screening may morph into defensiveness, even denial about individual risk or the importance of screening.
A study published earlier this year revealed that individuals who exhibited greater defensive behaviors — in particular, denial about the importance of timely CRC testing — were less likely to undergo FIT screening. People who avoided FIT screening also often engaged in what the researchers called ‘self-exemption’ — an assumption they didn’t need to be screened because they had regular bowel movements, lived a healthy lifestyle, and had no family history of CRC.
Even with a media spotlight on the importance of CRC screening and the rising incidence of CRC among younger people, people can convince themselves they’re not at risk and don’t need screening, said David A. Johnson, MD, a professor of medicine and chief of gastroenterology at Eastern Virginia Medical School in Norfolk, Virginia.
One of the key factors that contributes to whether or not someone screens for cancer is “perceived need,” said Conley. “If people don’t feel like it’s necessary, they wouldn’t make it a priority to get screened.”
People don’t always realize the importance of screening, said colorectal surgeon Cedrek McFadden, MD, vice-chair of operations at Prisma Health Department of Surgery and associate professor at the University of South Carolina School of Medicine in Greenville. “They do not fully identify with the preventive nature of the test and how it can save their lives.”
Cultural differences may play into people’s level of awareness or hesitancy. Several studies included in the 2016 meta-analysis found that individuals from Indian, African Caribbean, and Chinese American viewed screening tests as unnecessary because they believed their diet or natural remedies would protect them against disease, and Latinx and African American men viewed colonoscopy as a threat to their masculinity because it involved probing the rectal area.
To put it bluntly, some communities may simply find it hard to talk about “bowels and butts,” said Pearson. In her work as a patient navigator, Pearson often finds people feel embarrassed or ashamed when talking about this topic.
“Generally, we are taught that [these areas] are private” and this topic may be particularly taboo in certain cultures, she said.
Overcoming the Psychological Barriers
Despite hesitancy and resistance surrounding CRC screening, people do respond to education.
One counseling approach physicians can try is motivational interviewing, an evidence-based technique in which clinicians work to understand and show compassion toward a patient’s values and decision-making. Healthcare professionals can then plan behavior changes that align with those core values.
Tovian found this approach particularly helpful with a patient who initially resisted the colonoscopy prep because he feared having explosive diarrhea.
“You can’t make explosive diarrhea sound good,” Tovian said, but focusing “on the prize, not the process” can help.
He told the patient that a colonoscopy is unpleasant, but it represents a blip in time. The benefits of getting an early cancer diagnosis outweigh the time and discomfort of the prep and procedure.
“Exploring resistance with patients is very important,” Tovian said. “You discern what they’re afraid of and try to address those fears.”
McFadden also finds it important to talk to patients about their concerns, whether it’s about the procedure and possible complications or the results.
Like Tovian, McFadden had a patient who had heard some bad stories about the prep. We spent some time talking, including about the best prep options for him, and ultimately the patient didn’t think it was a big deal, McFadden recalled.
When talking to people about CRC screening, Pearson also focuses on the associated costs and insurance coverage, which often helps allay those anxieties.
Although educating patients doesn’t convince everyone to get screened, they “tend to appreciate the acknowledgement of what they are feeling and our support around screening,” Pearson said.
“We should empower patients to make decisions based on the information presented to them,” said Manish Sapra, MD, executive director of behavioral health at Northwell Health in New Hyde Park, New York. “Patients should feel that their decision is collaborative and preserves their autonomy.”
Primary care doctors could take a moment to ask their patients if they’ve been screened for CRC at regular checkups, said Mark A. Lewis, MD, director of gastrointestinal oncology at Intermountain Health in Murray, Utah.
Another strategy is to provide CRC screening for people already coming in for other screening tests. Intermountain Health encourages women who receive mammograms through its mobile mammogram buses to do FIT tests as well.
And blood-based CRC screening tests could become a viable and even more convenient option in the near future, though these tests still require further validation.
The issue with using a less-invasive screening test, however, is that patients who have a positive result for CRC would need to follow up with a colonoscopy. But not all patients are willing to do that, Lewis noted.
About 10% of patients refuse a colonoscopy following an abnormal FIT — a particular problem in rural areas of Utah where Lewis practices. This leaves the clinicians with their hands tied, Lewis said. “Patients just aren’t willing to travel long distances to do an invasive procedure that requires planning and time management,” he said.
Celebrity campaigns also can help put CRC screening, and colonoscopy in particular, on people’s radars. Actors such as Ryan Reynolds and Rob McElhenney have gone as far as filming their colonoscopies to encourage and humanize the process.
“Use of celebrity promotions is a great way to help engage and educate patients. It helps normalize and remove stigma from screening,” said Sapra.
Conley agreed. “PSAs and advertising can’t hurt. They have the potential to increase awareness, which is key for getting screened.”
But perhaps one of the more compelling ways to convince people to follow through with CRC screening is to make it about others.
“If you don’t do it for you, then do it for the people who love you,” said Johnson. “It’s horrible to have a loved one with colon cancer and know that it could have been prevented.”
Jennifer Lubell is a freelance medical writer in the greater Washington, DC area.
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