The broad goal of this study was to explore patient-perceived barriers to receiving a screening colonoscopy as identified by low-income Latino and white non-Latino individuals in an urban community health center. More specifically, we hoped to gain a better understanding of these barriers to help us implement systems changes and a bilingual patient navigator program to improve screening colonoscopy rates for all patients at the MGH Chelsea, especially Latinos. It should be noted that we found no clear differences in barriers between Latino and white non-Latino participants except for the obvious language barriers and the fact that Latino men seemed to talk less about these issues overall than other groups.
We were not surprised that system barriers were the most commonly reported problem that patients reported facing in obtaining a colonoscopy. These include barriers such as complicated scheduling processes, financial difficulties, and problems with transportation. These have been reported previously3,14,15,28,29
and were also described by primary care providers at MGH Chelsea in earlier qualitative interviews (unpublished work). However, our study did not highlight “missing work” as a major barrier despite the fact that this has been cited in other studies.30,31
It is possible that most of the patients in our sample were either unemployed or retired.
Fortunately, systems barriers are also probably the most amenable to (and often the primary target of) “patient navigator” programs.32–37
Such programs are designed to help patients navigate complex health care systems. They may have the flexibility to help patients address transportation and financial barriers, for example, by arranging escorts, accompanying groups of patients who can be scheduled together, and arranging free or affordable access to colonoscopy preparation medications kept on site. They can also call patients to remind them of their appointments, answer any questions about the bowel preparation, location, or procedure itself. Other system improvements might include simplifying the scheduling process, developing prep forms in Spanish and other languages, and scheduling “Spanish-friendly” colonoscopy days attended by bilingual nurses and gastroenterologists when possible or involving on-site interpreters.
Fear was another common barrier in our study and can be considered together with “dissuasion by others.” Similar to previous literature among various sociocultural groups, patients described fear of the procedure itself (particularly the pain associated with it) but also concerns about embarrassment, preparation, and potential complications.1–4,9,14,17,18,25,38,39
Fear of the diagnosis of cancer has been reported less often in the literature but was an important theme in our study. Patients may prefer not to look for problems that are not currently bothering them, especially if they think of cancer as an incurable disease, as many patients do.19,38–41
This may be based in part of a fatalistic attitude common among many patient groups1–3,29,42–46
and not specific to Latinos, despite unsubstantiated literature promoting this as a Latino cultural issue. In fact, some literature suggests that fatalism is more an issue of lower socioeconomic status rather than culture.3,15,38
Dissuasion by others often represents fears that are not specifically referred to as such and may represent the way that the patient chose to describe their fears rather than a separate theme. For example, mentioning that others have said colonoscopy is dangerous is another way of stating one’s own fear of the potential dangers.
To address these fears, patients should be provided a safe environment to encourage open discussion about what concerns them. It may be helpful to use “focused reassurance,” a term we have coined that describes a process of reassuring patients with information pertaining to their own specific concerns. This may include clarifying myths or false information about colonoscopy, educating patients about the process itself, and discussing approaches to minimizing the feared outcome. For example, a patient who fears pain because of the procedure can be provided with options for pain management and sedation and could also speak with others who have had a colonoscopy for reassurance. Fear of the diagnosis of cancer may warrant providing patients with focused education about early detection and the likelihood of colon cancer being curable.
The lack of desire or motivation to have a colonoscopy is a particularly challenging barrier. Whereas clinicians provide the initial recommendation for screening, they may or may not have the time to provide ongoing motivation. This is another area where navigator systems have proven useful.32–37
They can play a motivational role by forming relationships with patients, calling and meeting with them, and not allowing the issue of CRC screening to fall off the patient’s “radar.” This can help to overcome the inertia, which keeps many otherwise willing patients from getting screened. Clinicians and navigators alike could benefit from some basic training in motivational interviewing to help them address this challenge.47
Only 2 patients in our study had not heard about colonoscopy, specifically reporting that they had not received a recommendation for one from their primary care provider. Given the relatively low rate of CRC screening in the overall health center population, we had expected this to be more commonly reported. Other studies among diverse populations have shown much greater knowledge deficits about CRC screening.2,4,9,16–18,20,23–25,28
Our study’s high rate of awareness might be related to the fact that we recruited patients in the waiting rooms of the health center, potentially selecting patients who are better connected to the health care system. In addition, we did not characterize the level of knowledge among those who had heard of colonoscopy, which may have uncovered substantial knowledge deficits in this group. Automated provider reminders and clinician education may be useful in assuring that patients who are eligible receive a recommendation for a screening colonoscopy from their primary care provider.
Our study has several limitations. The data that emerged from this qualitative study provide a deeper understanding of the barriers to colon cancer screening that exist within this group of participants but cannot be generalized to the larger population. We used a single interviewer, which could introduce bias based on this individual’s style and emphasis or de-emphasis of particular topics. Of the patients who had received colonoscopies, some were for diagnostic purposes rather than screening. Whereas it is likely that these patients experience similar barriers, it is also possible that this could have affected our results somewhat. Findings from this study should help inform a larger quantitative study stratifying by race/ethnicity and focusing specifically on screening colonoscopy.
To reduce racial and ethnic disparities in colorectal cancer screening and to improve the rates of screening for all patients, it is important to understand the reasons why some patients are not receiving colonoscopies. Our findings support and add to the literature in this area by focusing on low-income Latino and white patients in an urban community health center and their barriers to receiving colonoscopy specifically. We propose a set of recommendations for intervention based on these barriers, many of which have been reported in other populations. Whereas each population is unique, addressing barriers to screening colonoscopy seems to include common themes that may provide a foundation for more tailored interventions.