In this mixed-methods study, a diverse group of patients—including a substantial portion of African Americans and those with low education and income levels—exposed a complex and nuanced set of barriers to CRC screening that previous research has not elucidated. Important implications of these results exist for public health, policymakers, physicians, and patients. The barriers related to (1) knowledge, a factual understanding of what to do and what it entails; (2) motivation, a willingness to obtain the test, despite reservations; and (3) ability, the means to obtain what one wants. Barriers to CRC screening exist in each area, as the literature documents, but this study sheds light on their nature and subtleties.
Lack of awareness and inadequate knowledge and information, documented barriers to screening, provide the rationale for efforts to educate the public about CRC and to encourage physicians to promote screening among eligible patients. The current data suggest, however, that merely advising people to get screened may not satisfy their information needs. Specifically, focus group participants articulated a need for more details in nine information domains (), ranging from disease prevalence to insurance coverage. The value of a personalized rationale statement for each individual was emphasized.
The central role of physician advice comports with the literature,4,5,7,11,13,17,21,39–41
which identifies such advice as a key motivator for CRC screening, and with responses to a fixed-response survey administered to 6,100 patients following (and informed by) this project. In that survey, the absence of physician advice ranked among the top five barriers to screening.31
A contrary finding was observed in the open-ended survey question, answered by 317 patients: Only 1.6% of respondents mentioned physician advice. This discrepancy may suggest that people may not attribute their behaviors to physicians unless cued to do so by response options. Additionally, many patients in this study saw a doctor within the last 2 years and had been screened for CRC.
Focus group participants of all social backgrounds expressed a need for more information about CRC screening and exhibited confusion, even after completing a worksheet about each test. FOBT, a test considered simple by clinicians, was described as confusing. Many patients harbored misconceptions. In the open-ended survey question, the absence of symptoms ranked among the top ten reasons for not being screened, a misconception restated in the focus groups, where some participants also implied that people without a family history of CRC need not be screened. Some participants confused in-office FOBT with home FOBT, thought colonoscopy—a procedure performed under anesthesia—was painful, and suspected that CRC was largely incurable and required a colostomy. Having four test options was considered desirable but complex, a problem undoubtedly amplified by the recent introduction of new screening technologies (e.g., virtual colonoscopy, stool DNA testing). Such confusion underscores the need, voiced by participants, to offer patients more complete information, both to overcome knowledge barriers and to foster more informed choices.
The focus groups also highlighted attitudes that attenuate interest, such as taboos surrounding CRC, fatalism, and fear in its many forms. They articulated barriers that prior literature has not emphasized, such as low self-worth, demands from coexisting illnesses and family life, inadequate social support, “para-sexual” issues, unpleasant past experiences with health care, and cynicism about financial motivations behind recommendations. The elicited spectrum of barriers that other studies have either omitted or ranked differently may reflect sampling artifacts or this study's comprehensive approach to posing questions.
When posed in an open-ended survey format, with no response options as cues, patients named fear—as a general construct—and apprehensions about the bowel prep as the first and second most commonly cited barriers. The three fear-related categories represented in reflect the most common barrier theme in the open-ended survey question (20% of responses). The focus groups deconstructed fear to reveal six subdomains—apart from generic fears—that included fears of the test, anesthesia, CRC, complications, and impact on loved ones. The top ten responses to the open-ended question included fears of pain, “the tube,” the procedure, the results, and embarassment.
Responses differed by gender. In open-ended responses, women were more likely to cite fear as a barrier, whereas men were more likely to cite lack of knowledge. Prior sexual abuse was mentioned as a barrier by one woman in a focus group. Stigma limits reporting of domestic violence, but its estimated prevalence is 20.7%, 42
making such trauma a potentially underrecognized barrier. Machismo and homophobic sensitivities, barriers cited by male focus group participants, have been reported in studies of male minorities.20,21
Attention to pychosocial barriers to screening is important. Patients with coexisting chronic illnesses, little social support, unspoken fears, fatalistic beliefs, or a history of abuse require efforts by clinicians to identify and address these barriers. Patients who defer retesting because of past experiences also require special attention. Psychosocial issues can be addressed in various ways, such as community and patient education programs that “normalize” and discuss these barriers, dialogue about CRC screening options that encourage patients to voice these concerns, and sensitivity among clinicians, when necessary, to address psychosocial issues first before initiating conversations about CRC. The motivation to overcome fears may, according to participants, depend on how strongly physicians advocate screening; they urged physicians to convey importance in both message and tone and to be courteous with patients, who may defer screening to avoid the “coldness” of the clinical encounter. They also noted that patients need time—to build motivation, reach closure, and arrange testing—and cannot be expected to act immediately when screening is recommended.
Participants identified test-specific barriers that color attitudes, such as those evoked by the bowel prep or handling stool. They were dubious about tests they considered outdated or inferior, such as barium enema or FOBT, a sentiment reported elsewhere among veterans15
and African-American church members19,43
FOBT is the only screening test shown in randomized trials to lower CRC mortality.44–47
Modeling studies and national guidelines advocate FOBT and other tests as fully effective alternatives to colonoscopy. Nonetheless, patients discounted these options as “cheap” substitutes for colonoscopy, echoing many physicians’ preferences for the latter. The larger goal of detecting CRC could be undermined by this attitude if patients who defer colonoscopy are not educated by physicians about equivalent alternatives or are misinformed about their effectiveness, which could utlimately result in receiving no form of screening.48
Regardless of their knowledge or attitudes, patients cannot obtain recommended screening tests or act on results if the necessary resources are lacking. In the open-ended survey, the fifth most common barrier cited by respondents was the costs of tests and inadequate health insurance coverage. Focus group participants also discussed this barrier, noting that access to certain tests is limited by health plans and prohibitive out-of-pocket costs. Those costs place greater financial burdens on disadvantaged patients, who also have diminished access to physicians. Providing universal coverage, with no copayments, for all recommended CRC screening tests are obvious priorities.
This study has several limitations. First, its generalizability is limited; the sample was drawn from established patients of three family medicine practices in Virginia. The study sample may have systematically excluded people with other perspectives about barriers. Patients in other settings and people with unreliable access to physicians or CRC screening (e.g., the uninsured) were under-represented. Approximately half of focus group participants and 68% of respondents to the open-ended survey had been screened for CRC previously. The perceived barriers of those who have been screened (and have overcome barriers) may differ from those who have not been screened, although study data did not reveal this difference. Second, differences in the framing of the open-ended survey question (i.e., most important barrier to “people”) and the focus group questions (i.e., barriers for “people like you”) may have introduced a subtle artifact. Focus group participants tended to answer these questions in reference to themselves or others they knew, rather than for the whole population. Third, the study, having occurred in 2005–2006, did not address recently introduced screening technologies. Finally, the data are cross-sectional and do not permit inference about causal relationships between reported barriers and screening behaviors.
The study has several strengths, however, and adds details and texture to current understanding of the barriers to CRC screening. The open-ended survey question captured unique data by not restricting the response options and giving respondents complete freedom to describe barriers in their own words without external cues. The focus groups were divided by gender and race to encourage participants to speak freely about sensitive issues, and followed a protocol that dealt comprehensively with issues surrounding a range of screening tests. Participants in both studies encompassed a diverse sample from urban, suburban, and rural settings, including many African Americans and low-income patients. Finally, the open-ended survey question and focus groups often produced congruent findings, both in content and relative importance, strengthening the evidence that psychosocial factors influence screening behaviors.