Highlights
- A recently published study found that people sometimes negotiate alternative follow-up care with their doctor after an abnormal fecal occult blood test (FOBT) result to avoid having a follow-up colonoscopy.
- These negotiations may be, in part, a defensive reaction triggered by anxiety when receiving bad news (i.e., the abnormal FOBT result).
- This study shows how emotional distress can be a barrier to follow-up care, and emphasizes the importance of ensuring providers have the time and skills to counsel emotionally distressed patients.
A new study has found that people who get screened for colorectal cancer and have an abnormal fecal occult blood test (FOBT) result sometimes reject their doctor’s recommendations and negotiate other follow-up care that is potentially less clinically appropriate. Cancer Care Ontario scientist Diego Llovet and ColonCancerCheck lead scientist Dr. Jill Tinmouth led the study, which was published in the American Journal of Gastroenterology.[1]
The investigators did qualitative interviews with 30 colorectal cancer screening participants in Ontario who did not have a follow-up colonoscopy after an abnormal FOBT result, and 30 doctors with at least 1 patient in this situation. The aim of the study was to understand the reasons for lack of follow-up colonoscopy after an abnormal FOBT and the alternative follow-up care plans that were made.
The study identified 4 reasons for lack of follow-up colonoscopy, 2 of which stood out for the investigators because of how often they were mentioned by interviewees. One reason was that some participants believed their abnormal FOBT result was not caused by cancer, which is called a “false-positive.” Instead, these participants thought their result was caused by something in their diet, a medication or benign bleeding (e.g. , hemorrhoids). Some also thought they could not have cancer if they had had a normal colonoscopy before their abnormal FOBT. Another reason participants did not want to have a colonoscopy was that they were afraid of the procedure, which they saw as invasive and having a difficult preparation.
The investigators found that participants who thought their abnormal result was a false-positive or who were afraid of colonoscopy refused to have a follow-up colonoscopy and negotiated other kinds of follow-up with their doctors. These participants asked to repeat their FOBT, to have a different lower bowel procedure (e.g., CT colonography) or to skip follow-up completely.
While some doctors tried to encourage participants who were resisting follow-up to have a colonoscopy, others agreed not to pursue the colonoscopy and did not address the issues raised by participants. The following excerpt from one of the study interviews illustrates how some participants negotiated with their doctors about follow-up care after their abnormal FOBT.
My adult son was home at the time of my FOBT. He suffers from irritable bowel syndrome and we have 1 washroom. So even though my toilet was clean for my test, I found that perhaps there still could be some residue from his blood, so maybe we needed to re-evaluate if this is actually my blood or not. My doctor recommended a colonoscopy but I said ‘I think I need to repeat the test to determine if it’s my blood that’s showing up’ and she agreed. Being a diabetic, I knew a colonoscopy would be a real challenge for me, getting a drive into the city and the stuff that you use to clean yourself out, to drink, I’m sure would be a challenge that would last for a couple of days afterwards.
Using psychosocial theory,[2][3] the investigators argued that, in some cases, participants who believed their abnormal FOBT was a false-positive may have been demonstrating defensive denial, which is when someone dismisses bad news (e.g., an abnormal FOBT result) that makes them anxious as a way to temporarily reduce their anxiety. It is possible that some of the participants who believed that their abnormal FOBT was a false-positive were motivated by a fear of having colorectal cancer, even if they did not explicitly state this fear and their doctor did not recognize it.
The study highlights the importance of emotional distress (i.e., fear of colonoscopy and possibly of colorectal cancer) as a barrier to follow-up colonoscopy and shows how this distress can influence follow-up decisions. Previous research has argued that lack of follow-up colonoscopy stems from doctors not knowing the guidelines for managing abnormal FOBTs.[4][5] However, the Llovet and Tinmouth study shows that this is not always the case. This study emphasizes the need to ensure that doctors have the time and skills to navigate difficult conversations with emotionally distressed patients as part of any effort to improve timely and appropriate follow-up colonoscopy rates.
While rates of follow-up have increased since the launch of ColonCancerCheck, Cancer Care Ontario’s population-based colorectal cancer screening program, they were about 78% at the time of the study[6] and have remained below the recommended target of 85% to 90%.[7][8] Delays in getting follow-up colonoscopy are associated with diagnosing colorectal cancer at a more advanced stage,[9][10] when treatment has less of a chance of working, and failing to get a follow-up colonoscopy increases the risk of dying from colorectal cancer.[11]
Although colorectal cancer is a leading cause of cancer death,[12] it can often be caught early through screening, when treatment has a better chance of working.[13][14][15] ColonCancerCheck recommends that people ages 50 to 74 at average risk of developing colorectal cancer get screened once every 2 years with FOBT, followed by colonoscopy if their FOBT is abnormal.[16]In Ontario, doctors distribute FOBT kits, receive and communicate FOBT results, counsel their patients with abnormal FOBT results and arrange follow-up colonoscopies when appropriate.
To improve rates of timely and appropriate follow-up colonoscopy among people with abnormal FOBT results, Cancer Care Ontario has implemented a number of initiatives at the regional, provider and patient levels. Some of these initiatives include Regional Diagnostic Assessment Programs, which facilitate access to follow-up colonoscopy in a person-centred care environment; accredited continuing professional development opportunities for doctors; and sending result and reminder letters to participants with abnormal FOBT results encouraging them to contact their doctor to discuss follow-up. Cancer Care Ontario is also doing a pilot project to explore the use of navigation to improve rates of timely and appropriate follow-up colonoscopy.