Patient Attitudes and Issues in Colon Cancer Screening

Authors: Dayna S. Early MD1 and Darrell M. Gray II MD1
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  • 1 From Washington University in St. Louis, St. Louis, Missouri.

Colorectal cancer (CRC) is the third leading cause of cancer death in the United States, and is largely preventable by CRC screening (CRCS). Participation in CRCS, however, is much lower than participation in other forms of preventive care. Many reasons for low rates of participation have been identified, and can be generally divided into provider- and patient-specific issues. Lack of a provider recommendation is a well-established and widely reported patient barrier to CRCS. Numerous patient-specific issues have been identified, ranging from fear of CRCS test results to lack of knowledge about individual risk for CRC and inadequate resources to complete CRCS. This article discusses the impact of patient attitudes and issues toward CRCS, with particular attention to modifiable psychosocial factors, the importance of patient preferences for one CRCS test over another, knowledge of CRC risk, and the impact of educational tools on patient compliance with CRCS.

Colorectal cancer (CRC) is largely preventable using screening, primarily through detecting and removing adenomatous polyps during flexible sigmoidoscopy (FS) and colonoscopy, but also through identifying early-stage cancers with fecal occult blood testing (FOBT) and fecal immunochemical testing (FIT).1-6 CRC screening (CRCS) has also been shown to reduce mortality from CRC.7,8 National recommendations for CRCS of average-risk individuals include a menu of options, ranging from annual FOBT to colonoscopy every 10 years.9 Despite the proven efficacy of CRCS, rates of use by average-risk individuals remain low, particularly compared with screening for other cancers.10-12 This limited use may be because of low rates of delivery (screening is not recommended/offered) or use (screening is recommended/offered but not chosen by the patient), or both.

Patient attitudes toward CRCS affect participation in screening tests, and patients report a wide range of barriers to its use13,14 (Table 1), including lack of provider recommendation, lack of resources (eg, insurance coverage, transportation), fear (of screening tests or test findings), embarrassment, and worry about being diagnosed with cancer. Understanding these attitudes may help improve use of this important preventive measure.

Patient Knowledge

Uptake of CRCS is largely influenced by individuals’ perception of personal CRC risk, the risk/benefit ratio of undergoing a screening test, levels of trust (in providers and provider recommendations), and fear or worry related to the CRCS test itself and/or the results.

How patients perceive their risk for CRC can have a significant impact on their health behavior, including efforts to seek out information about CRCS, and willingness to comply with a CRCS recommendation.15 Perceived risk can be influenced by several issues, with family history of CRC being the most widely studied. Patients may obtain information about their risk for CRC through Internet resources or by discussing their risk with their health care providers. Dillard et al16 showed that patients were more likely to seek information about CRCS if they perceived themselves to be at high risk rather than low risk, and that men who perceived themselves to be high risk were more likely to prefer shared decision-making with their provider. Felsen et al17 studied how risk factors for CRC and life-style factors that increase CRC risk (diabetes, smoking, obesity) influenced participation in CRCS in a large primary care practice. Their study found that high-risk participants (personal history of inflammatory bowel disease, colon polyps, or CRC, or family history of CRC) were more likely to be up-to-date with CRCS, and more likely to adhere to a physician recommendation for CRCS compared with average-risk individuals. Patients with lifestyle factors associated with increased risk of CRC were actually less likely to have participated in CRCS.

Table 1

Patient Barriers to CRCS

Table 1

Risk factors for CRC are generally well-known by providers, but individuals may underestimate or overestimate their risk, and perceived risk can influence behaviors associated with CRCS. Although national guidelines incorporate personal and family history of colorectal polyps and CRC into screening and surveillance recommendations, studies have shown that patients have poor recall of this information, limiting its usefulness.18-20 If individuals consider themselves average or low risk for CRC, they may not seek out information about CRCS or pursue conversations about CRCS with their providers. However, individuals who underestimate their risk for CRC may change their behavior if they are provided information about their CRC risk. Wang et al21 used a Web-based tool developed by the CDC that allows participants to assess familial risk for several conditions, including CRC, and provides personalized prevention messages based on risk. Subjects in this study were randomized to receive either personalized information about disease risk, or standard (not personalized) information about screening in general. The investigators found that individuals who underestimated their risk for CRC were more likely than controls to change their perceived risk to be congruent with actual risk if they received the intervention (personalized risk assessment through the CDC tool). Yim et al22 also assessed the effect of perceived risk, but in a much different patient population. Their study included patients who had recently undergone screening colonoscopy, and assessed subjects’ perception of whether the colonoscopy had reduced their chance of dying from CRC. The authors found that subjects were significantly more likely to believe that colonoscopy had reduced their risk of death from CRC if they had a family history of CRC, a personal history of colon polyps, or had undergone their first colonoscopy.

Psychosocial Factors

Psychosocial factors may reduce compliance with CRCS. Patients report psychosocial factors such as fear (of tests or test results), embarrassment, and mistrust of the health care system, and these factors have been shown to impact willingness to participate in CRCS. For example, Bynum et al23 studied an ethnically diverse group of subjects older than 50 years and found that fear of acquiring AIDS from CRCS and fear of pain and embarrassment during a CRCS test were associated with an unwillingness to participate in CRCS, although mistrust of medical personnel was not. Through work with focus groups, James et al24 found that fear of cancer treatment, fatalism, and lack of confidence in CRCS tests were additional psychosocial factors that may affect compliance with CRCS. Yet findings have conflicted regarding whether fear or worry about having CRC discovered during screening influences compliance, with some studies showing an increase in compliance and others not.25

Increasing patient knowledge about CRCS and educating patients about their personal CRC risk can help improve participation in CRCS programs. Additionally, understanding the impact of psychosocial factors provides an opportunity to improve CRCS compliance through increasing patient knowledge.

Patient Preference

Many features of CRCS tests can be considered when choosing a screening program, including test accuracy, amount of colon examined by the test, complication rate of the test, cost to the patient, discomfort associated with the test, frequency of testing, whether follow-up testing is needed, place of service, level of scientific evidence supporting the test, type of preparation needed for the test, amount of time the test takes, and whether sedation is needed. In view of the unique features of each CRCS test, many patients have preferences for one test over another,26-35 and this preference may impact their willingness to undergo CRCS.

National recommendations for CRCS of average-risk individuals differ from those for many other cancers, in that CRCS can be performed using several different modalities, each with its own advantages and disadvantages.9 Current options for CRCS include annual FOBT or FIT, FS every 5 years, annual FOBT plus FS every 5 years, or colonoscopy every 10 years. Stool samples for FOBT and FIT are collected in the patient’s home, and testing cards are returned to the provider for development. This approach is low-cost, low-risk, and painless, but is primarily a cancer detection test, rather than a cancer prevention test, because most polyps do not produce occult blood loss and therefore will not be detected. FS is performed in a doctor’s office or hospital outpatient department, and therefore requires a greater time commitment from the patient than FOBT/FIT. Most procedures are performed with patients unsedated, and therefore pain and discomfort may occur, but patients are not restricted in terms of diet or activity after the procedure is complete. FS is very effective for identifying and removing polyps in the distal colon,4,5 but only examines approximately one-fourth to one-third of the colon, and is therefore insensitive for proximal colon lesions. Because of its limitations, some clinicians have opined that FS is comparable to performing a mammogram on one breast, and consider it incomplete screening.36 Colonoscopy requires colonic cleansing with a potent laxative before the test and, because sedation is typically administered, requires restrictions on activity after the procedure. A distinct advantage of colonoscopy is that colon polyps are identified and removed at the time of the procedure, making it an effective cancer prevention test. Colonoscopy is more expensive than FOBT, FIT, and FS, but less expensive than computed tomography colonography (CTC), and carries a risk of complications of approximately 1 in 350.37 Colonoscopy is recommended for patients with positive FOBT or FIT results, and for patients with a polyp identified on FS.9 CTC is not currently covered by Medicare for routine CRCS. A CTC examination requires colonic lavage but not sedation. The main disadvantage of CTC is that when polyps are identified, the patient must then undergo colonoscopy to remove them.

Several studies have shown that patients exhibit preferences for one CRCS test over another, and most patients can articulate reasons for their preference. Shokar et al,31 for example, queried a cohort of primary care patients about CRCS test preferences. The patients were given 13 test attributes to consider and rank, and were asked about CRCS test preference. Patient preferences were highest for test accuracy, amount of colon examined, strong scientific evidence for efficacy, and low risk of complications. Because no single test can satisfy all of these attributes, patients were asked to rank FOBT, FS, colonoscopy, and double-contrast barium enema (DCBE). Colonoscopy was preferred by most, followed by FS, FOBT, and DCBE. A similar study by Imaeda et al33 found that patients place importance on the sensitivity of the test, the risk of a complication, and the need for a second test. In this study, patients preferred colonoscopy, followed by colon capsule, CTC, FOBT, and FS. Ling et al32 showed that for patients who value test accuracy, colonoscopy was preferred by 62%, and for those who placed importance on a noninvasive test, FOBT was preferred by 76%. Another study by Wolf et al26 showed that patients prefer FOBT over colonoscopy primarily because it is convenient and noninvasive.

Patient acceptance of CRCS can be optimized through an understanding that CRCS is unique because different options are available and that patients have preferences regarding method. Patient preference has been shown to impact compliance with a CRCS recommendation. For example, Senore et al27 showed that when patients were offered screening with FS, approximately 35% participated. Those who did not participate in FS screening were then offered FIT screening, in which an additional 19% participated, suggesting that patient preferences for screening tests affect compliance. Inadomi et al28 studied the effect of patient preference on compliance by randomizing patients into 3 groups: those receiving a recommendation for colonoscopy, receiving a recommendation for FOBT, or undergoing their choice of FOBT or colonoscopy. Subject compliance with the test to which they were randomized was highest among those allowed to choose between FOBT and colonoscopy (69% vs 67% for FOBT and 38% for colonoscopy). Interestingly, nonwhite participants adhered more often to FOBT, whereas white participants adhered more often to colonoscopy.

Educating patients about CRCS test options and taking into account patient preferences is a strategy that may produce higher rates of CRCS use, and can be incorporated into primary care practices.

Effect of Educational Tools

A wide variety of educational tools have been studied with respect to their impact on compliance with a CRCS recommendation. Educational tools can be delivered in print, online, or by personal communication and should be tailored to the target patient population, taking into account barriers to CRCS, reading level, socioeconomic status, and access to resources.

From a provider standpoint, educational tools and interventions vary considerably in the investment required in terms of personnel time and resources needed to provide the education. For example, written educational materials require an initial investment for creation or acquisition, but can subsequently be reproduced as needed. Use of telephone reminders require either staff time to conduct or the use of automated technology, both of which may be cost prohibitive for some providers. In recent years, patient navigators have been incorporated into the educational toolbox. Patient navigators are trained health care personnel who can assist patients in overcoming barriers to screening (including but not limited to health literacy, mistrust, fear, transportation, and cost) and in navigating the sequence of events leading to a successful screening examination (eg, referral, scheduling, bowel preparation).

Patient navigation represents the education intervention that requires the most commitment in terms of personnel time and resources. For example, a patient navigator who is helping a patient perform FOBT or FIT testing will provide education about how to collect a sample for the test and apply it to the test card correctly, and may provide reminder phone calls to complete the test, or even make a home visit to collect the test. Furthermore, colonoscopy is a multistep process, and patient navigators may assist patients with numerous steps including scheduling the test, understanding the steps required for adequate bowel cleansing, arranging transportation to and from the colonoscopy, and identifying resources to pay for costs associated with the test.

In a pilot study that randomized low-income minorities to receive a CRCS recommendation with or without the assistance of a patient navigator, Christie et al38 reported that 54% of patients who had assistance completed a colonoscopy compared with 13% who had no assistance, and subjects who were assisted were overall very satisfied. Levy et al39 studied a combination of written educational tools and a telephone call aimed at increasing CRCS rates in the Iowa Research Network Practices. Patients in this study were randomized to receive written and DVD educational materials with a FIT, with or without a reminder telephone call. A significant overall increase was seen in subjects’ interest in CRCS, and the return rate of FIT reached nearly 50% in both groups, although the telephone call had no added benefit over the print and DVD materials in terms of return of FIT cards.

Other investigators have studied combined patient- and provider-focused interventions to increase uptake of CRCS. Ling et al40 examined the impact on CRCS uptake of a nontailored versus a tailored letter to 599 patients, and a nonenhanced versus an enhanced intervention for office and patient management in 10 primary care physicians’ offices. All letters to patients contained an invitation to participate in endoscopic CRCS, whereas the tailored letters also contained patient-specific information that would allow patients to judge their risk of CRCS. The office interventions all included educational meetings with physicians and staff about CRCS processes, whereas the enhanced interventions also included assistance in implementing office protocols for CRCS, and assistance to patients in overcoming barriers to CRCS. The enhanced office and patient management significantly increased uptake of CRCS, whereas the tailored patient letter did not show an advantage over the nontailored patient letter, underscoring the important role that primary care providers play in promoting use of CRCS. In a study with a similar design, however, Sequist et al41 found that a patient-focused intervention was more effective than a physician-focused intervention in increasing CRCS rates. This study involved 21,860 patients randomized to receive educational pamphlets along with instructions for performing FOBT or scheduling flexible sigmoidoscopy or colonoscopy, and 110 primary care physicians randomized to receive electronic reminders. Screening rates were significantly higher for patients who received the mailed information compared with controls, whereas the electronic physician reminders did not increase CRCS rates. Green et al42 showed that a stepped up approach to interventions resulted in incremental increases in compliance with a CRCS recommendation. Compliance rates were 26% for usual care, 51% for those receiving an automated mailing, 58% for those receiving an automated mailing and telephone assistance, and 65% for those receiving an automated mailing, telephone assistance, and the support of a nurse navigator.

Printed material or online information can be provided to patients to increase their knowledge regarding CRCS test choices and can encourage shared decision-making with their provider. Any intervention to increase compliance with CRCS is generally more effective than none, and therefore providers can use the type of intervention that best suits their office resources and patient population (Table 2).

Table 2

Methods to Address Patient Attitudes and Issues Regarding CRCS

Table 2

Conclusions

Participation in CRCS is largely influenced by patient risk perception, knowledge, psychosocial factors, screening test preference, and economic and geographic barriers. Addressing the modifiable barriers to CRCS may significantly improve uptake. No “one size fits all” educational tool has been proven to increase screening rates. Data suggest that interventions tailored to a target population may have benefit. Moreover, provider awareness of patient attitudes toward and barriers to CRCS is critical to increase uptake. Increased screening is necessary to fully realize its impact on reducing CRC mortality.

The authors have disclosed that they have no financial interests, arrangements, affiliations, or commercial interests with the manufacturers of any products discussed in this article or their competitors.

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Correspondence: Dayna S. Early, MD, Washington University in St. Louis, 660 South Euclid Avenue, Campus Box 8124, St. Louis, MO 63110. E-mail: dearly@dom.wustl.edu
  • 1.

    Mandel JS, Church TR, Bond JH et al.. The effect of fecal occult-blood screening on the incidence of colorectal cancer. N Engl J Med 2000;343:16031607.

    • Search Google Scholar
    • Export Citation
  • 2.

    Hardcastle JD, Chamberlain JO, Robinson MH et al.. Randomised controlled trial of faecal-occult-blood screening for colorectal cancer. Lancet 1996;348:14721477.

    • Search Google Scholar
    • Export Citation
  • 3.

    Smith A, Young GP, Cole SR, Bampton P. Comparison of a brush-sampling fecal immunochemical test for hemoglobin with a sensitive guaiac-based fecal occult blood test in detection of colorectal neoplasia. Cancer 2006;107:21522159.

    • Search Google Scholar
    • Export Citation
  • 4.

    Selby JV, Friedman GD, Quesenberry CP Jr, Weiss NS. A case-control study of screening sigmoidoscopy and mortality from colorectal cancer. N Engl J Med 1992;326:653657.

    • Search Google Scholar
    • Export Citation
  • 5.

    Newcomb PA, Norfleet RG & Storer BE et al. Screening sigmoidoscopy and colorectal cancer mortality. J Natl Cancer Inst 1992;84:15721575.

  • 6.

    Winawer SJ, Zauber AG, Ho MN et al.. Prevention of colorectal cancer by colonoscopic polypectomy. The National Polyp Study Workgroup. N Engl J Med 1993;329:19771981.

    • Search Google Scholar
    • Export Citation
  • 7.

    Nishihara R, Wu K, Lochhead P et al.. Long-term colorectal-cancer incidence and mortality after lower endoscopy. N Engl J Med 2013;369:10951105.

  • 8.

    Zauber AG, Winawer SJ, O’Brien MJ et al.. Colonoscopic polypectomy and long-term prevention of colorectal-cancer deaths. N Engl J Med 2012;366:687696.

    • Search Google Scholar
    • Export Citation
  • 9.

    Levin B, Lieberman DA, McFarland B et al.; American Cancer Society Colorectal Cancer Advisory Group; US Multi-Society Task Force; American College of Radiology Colon Cancer Committee. Screening and surveillance for the early detection of colorectal cancer and adenomatous polyps, 2008: a joint guideline from the American Cancer Society, the US Multi-Society Task Force on Colorectal Cancer, and the American College of Radiology. Gastroenterology 2008;134:15701595.

    • Search Google Scholar
    • Export Citation
  • 10.

    Blackman DK, Bennett EM, Miller DS. Trends in self-reported use of mammograms (1989-1997) and Papanicolaou tests (1991-1997)—Behavioral Risk Factor Surveillance System. MMWR CDC Surveill Summ 1999;48:122.

    • Search Google Scholar
    • Export Citation
  • 11.

    Schabert VF, Ye X, Insinga RP et al.. Five-year routine cervical cancer screening rates and intervals in a US health plan. Curr Med Res Opin 2008;24:24292435.

    • Search Google Scholar
    • Export Citation
  • 12.

    Centers for Disease Control and Prevention. Increased use of colorectal cancer tests—United States, 2002 and 2004. MMWR Morb Mortal Wkly Rep 2006;55:308311.

    • Search Google Scholar
    • Export Citation
  • 13.

    Green AR, Peters-Lewis A, Percac-Lima S et al.. Barriers to screening colonoscopy for low-income Latino and white patients in an urban community health center. J Gen Intern Med 2008;23:834840.

    • Search Google Scholar
    • Export Citation
  • 14.

    Shike M, Schattner M, Genao A et al.. Expanding colorectal cancer screening among minority women. Cancer 2011;117:7076.

  • 15.

    Rutten LF, Hesse BW, Moser RP et al.. Public perceptions of cancer prevention, screening, and survival: comparison with state-of-science evidence for colon, skin, and lung cancer. J Cancer Educ 2009;24:4048.

    • Search Google Scholar
    • Export Citation
  • 16.

    Dillard AJ, Couper MP, Zikmund-Fisher BJ. Perceived risk of cancer and patient reports of participation in decisions about screening: the DECISIONS study. Med Decis Making 2010;30(5 Suppl):96S105S.

    • Search Google Scholar
    • Export Citation
  • 17.

    Felsen CB, Piasecki A, Ferrante JM et al.. Colorectal cancer screening among primary care patients: does risk affect screening behavior? J Community Health 2011;36:605611.

    • Search Google Scholar
    • Export Citation
  • 18.

    Elias PS, Romagnuolo J, Hoffman B. Poor patient knowledge regarding family history of colon polyps: implications for the feasibility of stratified screening recommendations. Gastrointest Endosc 2012;75:598603.

    • Search Google Scholar
    • Export Citation
  • 19.

    Waters EA, Hay JL, Orom H et al.. “Don’t know” responses to risk perception measures: implications for underserved populations. Med Decis Making 2013;33:271281.

    • Search Google Scholar
    • Export Citation
  • 20.

    Kumaravel V, Heald B, Lopez R et al.. Patients do not recall important details about polyps, required for colorectal cancer prevention. Clin Gastroenterol Hepatol 2013;11:543547.e1-2.

    • Search Google Scholar
    • Export Citation
  • 21.

    Wang C, Sen A, Ruffin MT IV et al.. Family history assessment: impact on disease risk perceptions. Am J Prev Med 2012;43:392398.

  • 22.

    Yim M, Butterly LF, Goodrich ME et al.. Perception of colonoscopy benefits: a gap in patient knowledge? J Community Health 2012;37:719724.

  • 23.

    Bynum SA, Davis JL, Green BL, Katz RV. Unwillingness to participate in colorectal cancer screening: examining fears, attitudes, and medical mistrust in an ethnically diverse sample of adults 50 years and older. Am J Health Promot 2012;26:295300.

    • Search Google Scholar
    • Export Citation
  • 24.

    James AS, Daley CM, Greiner KA. Knowledge and attitudes about colon cancer screening among African Americans. Am J Health Behav 2011;35:393401.

    • Search Google Scholar
    • Export Citation
  • 25.

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