Beliefs and Attitudes to Bowel Cancer Screening in Patients with CKD: A Semistructured Interview Study

Unspoken Stigma.

Bowel cancer and bowel cancer screening were described as a “taboo” topic. Some participants were reluctant to initiate discussion regarding bowel cancer, because they felt that speaking about bowel cancer made them feel as if their “privacy has been invaded.” Many felt that the topic was “too graphic,” and they would prefer to “bury their head in the sand” than to address the issue and talk about it with their family and friends. Although participants felt the cancer was “a very serious type,” the associated stigma meant that patients would be “less likely to seek treatment mainly because of embarrassment.” Some felt that that bowel cancer needed to be “talked about more” to increase the social acceptability of the topic.

Ambiguity of Risk.

Some transplant recipients understood that they had a “greater chance” of cancer because of immunosuppression use, although some thought that this increased risk was only for skin cancer. Some patients on dialysis and some patients with less advanced stage CKD “would not have dreamt” that bowel cancer was associated with kidney disease. Furthermore, some felt that they were “probably no worse” than the general population, because their health condition was “stabilized” with medications.

Absence of Symptomatic Prompting.

Participants were not prompted to “worry” about bowel cancer, because “until the symptoms appear, you just don’t think about it.” After symptoms, such as blood and pain, occur, then the issues would be their “number one priority”; until then, undergoing testing was not a priority, because they “spend enough time at the doctors as it is without going looking for other things.”

Preserving the Chance of Transplantation.

For participants who participated in bowel cancer screening as a part of their transplant assessment, the results of the screening gave them “peace of mind.” They became reassured that they were “healthy and they could deserve” the kidney when the opportunity for transplant arose, because it would be “devastating” to find out that they had cancer after receiving a transplant. Furthermore, they were particularly concerned that, if they then died due to the cancer, it was a “waste of someone else’s life, because [the other potential recipient] may die [due to not being transplanted].”

Over-Riding Attention to Kidney Disease.

Participants prioritized kidney disease as their main health concern, because “it’s an everyday thing.” Predialysis participants were focused on preventing progression to ESRD requiring dialysis—“you’re on dialysis for the rest of your life, you’re not thinking about cancer.” Transplant recipients strived to avoid “wasting the transplant” by “keeping well now, not in the future,” and some did not prioritize bowel cancer screening, because it was seen as a long-term preventative action. For participants who had completed bowel cancer screening, it did not “interest them that much at the moment,” because they had been reassured by their results and were able to focus on their kidney health, which was “very important at the moment.”

Protecting Graft Survival.

Kidney transplant recipients felt that it was important to be “proactive” and “take every opportunity” to make sure that they stay healthy and protect their transplant. One participant believed that it was important to maintain their health by undertaking preventative measures, such as bowel cancer screening, to ensure the longevity of their kidney, because they had “run out” of potential donors.

Showing Loyalty to the Donor.

Transplant recipients felt motivated to maintain their health out of a “responsibility to the donor” or as a way of “giving back.” One participant who received a kidney from his spouse believed that having “the donor to remind me” encouraged him to attend follow-up and tests, including bowel cancer screening.

Evading Severe Consequences.

Performing a “quick test” for bowel cancer screening was worthwhile, because the results gave participants “peace of mind.” They felt reassured knowing that they could eliminate bowel cancer as a threat to their health, and it “relaxes the pressure on life.” Participants understood that, if you “get [bowel cancer] early enough, it’s treatable,” and you can “stop it getting any worse or killing you,” because “prevention is better than cure.” They also felt that it was worth taking the time to take a test, because it may “save a lot of pain and anguish” later on. Participants who had colonoscopies that detected polyps felt “happy” that they were now having regular checkups by gastroenterologists. Furthermore, participants were “accepting” of the possibility of having a false positive result, because it is “just part of the process.” They believed that proceeding with colonoscopy and being found to be normal after receiving a positive fecal immunochemical test result “is better than dying from cancer” and that “you need to know for sure” if there is anything serious.

Cognizant of Susceptibility.

Understanding the seriousness of the cancer and their heightened susceptibility was “all they needed to hear.” Patients who understood their heightened risk were motivated to participate in screening, and for many, they “jumped to the opportunity,” because “you can’t treat it lightly” and “prevention is better than getting a terrible, terrible illness.”

Reluctance to Perform a Repulsive Procedure.

Participants were reluctant to participate in bowel cancer screening due to the “horrendous” preparation of the colonoscopy and the fear of the “discomfort” of the test. They felt “embarrassed about [collecting a stool sample] more than anything,” and it was “distasteful performing the test.” For participants who had a colonoscopy, the preparation was the “uncomfortable” part, because it was “not very nice tasting” and “made a very messy business.” Some speculated that patients would “prefer to suffer the consequences [of bowel cancer] than take the test.”

Intensifying Disease Burden Threshold.

Participants commonly felt that screening for bowel cancer was “another thing to add to the list.” Already contending with multiple serious health issues, the thought of potentially being diagnosed with bowel cancer was perceived as another burden that would be too overwhelming with which to cope. Some were reluctant to participate, because they did “not want to know more bad news”: that would be “one more thing they’ve got to deal with,” and they have “enough problems without worrying” about bowel cancer as well.

Anxiety of a Positive Test.

Participants who completed the stool test or colonoscopy were “terrified” and “nervous” to find out the results. For many, it was “worrying at the time,” because they anticipated further burden on their life and risk to their survival. Some feared that they would “wake up with a colostomy bag” after the colonoscopy; however, they were “relieved” to find out that the results were normal.

Accepting the Inevitable.

Bowel cancer was “put on the backburner,” because participants had “other issues that are real.” They were willing to take a chance, and “if it happens, deal with it then,” because they did not want to be “weighted down” by a disease that had not yet occurred. Participants also felt that they “already had bad enough luck,” and they were hopeful that they would not suffer from any other health problems.

Negligible Financial Effect.

Costs to participate in screening (purchase of a fecal immunochemical test from the chemist and having time off work for the colonoscopy procedure) were not perceived as a major deterrent to screening. Bowel cancer screening was regarded as “hugely worthwhile,” and participants stated that, if the screening can be “lifesaving, then you can’t put a cost on that.” However, many participants believed that more patients with CKD may be more willing to complete the screening if it was free, because “cost-effectiveness is a priority” given their other health expenses. Participants who had proceeded with a colonoscopy after a positive fecal immunochemical test result felt that taking a bit of time off work was justified with the outcome of the colonoscopy result.

Convenience.

Before participating in the fecal immunochemical test, patients felt “apprehensive” toward the process but were reassured when they received “straightforward instructions” and the test was “less invasive” than having a colonoscopy. The “quick and easy” test was perceived as only a “small inconvenience for much better rewards,” acknowledging that the screening was integral for the “betterment of their health.”

Protecting Anonymity.

Participants felt that it was “more palatable” to complete their fecal immunochemical tests within the privacy of their own homes, because “no one had to know about what you did,” and they could not be identified. Although the test was considered out of the ordinary, the convenience of sending the test back in the mail (they could remain “anonymous,” and it did not “look like anything innocuous”) was applauded.

Decisions about bowel cancer screening were made in the context of managing what was perceived to be an overwhelming burden of kidney disease and maintaining and not disrupting the current health status. We did not identify any differences on the basis of age or burden of comorbidity. However, some differences were noted across CKD stages. Kidney transplant recipients, committed to preserving their graft, were particularly motivated to participate in cancer screening if it was perceived to prolong graft survival. In contrast, patients on dialysis had to contend with the daily, ongoing, and onerous dialysis regimen, and some felt that they did not have the physical and emotional capacity to participate in bowel cancer screening. A major barrier for predialysis patients and patients on dialysis was the fear of potential complications from a positive fecal immunochemical test result or a cancer diagnosis, because they are already overwhelmed with their current disease and its associated treatment burden.