Barriers to Colorectal Cancer Screening With Fecal Occult Blood Testing in a Predominantly Minority Urban Population: A Qualitative Study

Colorectal cancer is the second leading cause of cancer death in the United States.1 Appropriate screening can reduce incidence of and mortality from colorectal cancer.2–5 The US Preventive Services Task Force recommends that all average-risk individuals aged 50 years and older receive colorectal cancer screening.6 The American Cancer Society recommends several acceptable approaches to screening, including an annual 3-card home fecal occult blood test.7 The Healthy People 2010 objective is to increase the proportion of people aged 50 and older who have received a fecal occult blood test within the preceding 2 years to at least 50%.8 Lack of knowledge, confidence, and skills; negative attitudes toward the tests themselves; fear of the consequences of screening; and inadequate social support all have been suggested as possible barriers to colorectal cancer screening,9 whereas positive attitudes toward colorectal cancer screening and physician encouragement have been associated with receipt of a fecal occult blood test with a home stool kit.10

Despite these studies, gaps remain in what is known about barriers to successful interventions to increase colorectal cancer screening, particularly in minority populations.11,12 This study is based on the assumption that identification and definition of barriers to colorectal cancer screening in low-income, underserved minority populations can help guide the development of effective interventions.

METHODS

The Healthy Colon Project is a randomized controlled trial designed to test whether a telephone-based health intervention will increase fecal occult blood test screening rates for colorectal cancer among active members and their dependents in a health care workers’ union.13 More than 80% of the union members are from lower-income occupations, including food service workers, custodians, laboratory technicians, and clerks. The approximate racial/ethnic composition is 35% Black non-Hispanic, 45% Hispanic, 15% White non-Hispanic, and 5% Asian/Pacific Islander. The fecal occult blood test is 100% reimbursable for all union members.

In the year 2000, a pilot study was conducted with 42 participants, aged 53 to 80 years, who had not had colorectal cancer screening within the preceding 2 years and who agreed to pilot test the telephone-based health education intervention. An intensive qualitative analysis of information obtained from 8 of these 42 pilot subjects was performed to improve understanding about barriers to successful intervention implementation.14 These 8 cases were selected because they illustrate particular barriers.

The intervention involved multiple telephone conversations between the health educator and each participant over a 2-month period. The initial call followed a loosely structured outline and contained selected factual information, tailored to the needs of each participant (e.g., stage of readiness to change, colorectal cancer knowledge, screening test preference, access to resources, skills, social support), as well as other individual characteristics (e.g., talkativeness). Several health behavior and health education theories guided these interactions.15–18 If a verbal commitment to complete a colorectal cancer screening test was made, follow-up contacts reinforced this commitment and addressed barriers. If a verbal commitment was not offered, subsequent calls addressed barriers to making such a commitment.

Data Collection and Analysis

The health educator took detailed written notes of each participant interaction during and after each telephone interaction. Descriptive qualitative analysis was used to identify and describe the barriers encountered and potential interventions to address the respective barriers for each participant. Data were summarized to identify recurrent issues.

RESULTS

The 8 participants (6 women and 2 men) ranged in age from 54 to 72 years (mean = 61.4). Five participants characterized their race/ethnicity as Hispanic, 2 as Black or African American, and 1 as White. Descriptions of the participant interactions with the health educator are presented to illustrate the most common barriers encountered (Table 1 ▶). The main barriers were lack of colorectal cancer knowledge, lack of communication skills and self-efficacy in skills to act on motivation, unavailability and inaccessibility of fecal occult blood test kits, perceived lack of social support, and fear and concomitant denial that colorectal cancer “won’t happen to me.” In many cases, intervention strategies could be tailored to address these barriers (Table 1 ▶).

TABLE 1—

Description of Selected Cases and Potential Implications

Case Report

Implications

R. B. had little knowledge about colorectal cancer or colorectal cancer screening tests. Within 2 weeks of educating R. B. about the various colorectal cancer tests, she contacted her physician’s office and went for an appointment. She received, conducted, and returned a completed fecal occult blood test kit within the following few days. The results came back positive. R. B. was upset not only by the test result but also by the way in which her physician reportedly handled the situation. Her physician reportedly asked her to complete another fecal occult blood test and referred her for a Papanicolaou test and mammogram. He reportedly did not schedule another follow-up appointment for 2 months. R. B. was very scared and very upset. She did not want to wait 2 months for a follow-up appointment. After considerable discussion with the health educator, she decided to find another physician. The new physician reportedly referred her for a colonoscopy immediately, which yielded a negative result. R. J. was not familiar with colorectal cancer or colorectal cancer screening tests. Once educated, she decided to call her physician to request a kit. When the health educator called R. J. to follow up, R. J. indicated that she had contacted the physician’s office and was told that fecal occult blood test kits were not distributed by mail and that she would have to come in for an appointment. R. J. did not want to go in for an appointment. Contact was made with the provider who was urged to send R. J. the kit by mail, which he agreed to do. Unfortunately, when the kit arrived by mail, it did not include an instruction sheet or return envelope. P. J. was quite knowledgeable about colorectal cancer and screening tests for colorectal cancer. Nevertheless, he had not received screening. P. J. was a recent immigrant, and his proficiency in English was somewhat limited. Although he intended to call his physician to request a kit, when the time came, he felt uncomfortable with his ability to pronounce the words “fecal occult blood test.” To overcome this barrier, it was necessary for P. J. to role-play with the health educator how to request the kit in order to have the confidence needed to place a call to his physician. When P. J. contacted his physician to request the kit, his physician advised him to instead receive a colonoscopy. P. J. did not want an invasive procedure and insisted on receiving the fecal occult blood test. His physician reportedly sent him the fecal occult blood test kit, and P. J. completed and returned the fecal occult blood test. R. T. was familiar with colorectal cancer screening tests and valued their importance. R. T. knew that her physician carried the fecal occult blood test kits and forecasted that there would be no difficulty in attaining one because his office is located 1 floor down from hers in the hospital where they both worked. Within 1 week of the initial intervention call, R. T. had obtained the kit from her physician, completed it, and returned it for analysis. Although R. T. was clearly motivated to participate in colorectal cancer screening practices, it was necessary for her to be reminded. E. G. had misconceptions about the need for colorectal cancer screening. She believed that you need to take a fecal occult blood test only if you feel pain. When the guidelines for colorectal cancer screening were clearly defined for her by the health educator, E. G. quickly made a verbal commitment to call her physician to request a fecal occult blood test. When E. G. received the test, she was discouraged by the nutritional restrictions that accompanied the kit. Consuming red meat was very important to E. G., and she was not willing to give up her red meat intake for 3 days to complete a valid fecal occult blood test. Despite repeated attempts to persuade E. G. to take the test and providing numerous suggestions for recipes involving meat substitutes, ultimately E. G. decided that she was not willing to stop eating red meat for 3 days. L. P. believed that she would need a colorectal cancer screening test only if she had visible blood in her stool. When the guidelines for colorectal cancer screening were described to her, L. P. decided that she should receive a fecal occult blood test. One of the main factors resulting in L. P.’s willingness to do a fecal occult blood test was support from her husband who was a laboratory technician. After discussing the test with him, he agreed that it was a good idea for her to complete the fecal occult blood test and to assist her in implementing the procedures required by the test. In a very short time, she obtained and completed the fecal occult blood test. C. C. was unfamiliar with colorectal cancer screening tests. She was comfortable discussing the topic on the telephone but indicated that she was not comfortable discussing the topic with her physician who was male. C. C.’s situation was particularly troubling because she reported having repeated episodes of rectal bleeding. After a great deal of education and encouragement, C. C. finally agreed to call her physician to request a fecal occult blood test kit through the mail. The physician, however, reportedly refused to send her a kit through the mail and requested that she come in for an appointment. C. C. was unwilling to schedule an office visit to address the topic of colorectal cancer screening because she was uncomfortable discussing the topic with her physician and with him examining her rectum. J. B. had never heard of any colorectal cancer screening tests or that colorectal cancer affects both men and women. Despite efforts to clarify these misconceptions, repeated efforts to encourage J. B. to seek screening were unsuccessful because he was adamant that colorectal cancer would not happen to him.

Increasing knowledge alone may enhance an individual’s motivation to initiate a new behavior. A health educator should be prepared to deal with a full range of consequences that may result from helping to elicit a behavior change. Providing emotional and social support can be an important role of a health educator. In this case, helping an individual cope with her fear, and in taking control of her health care by finding a new provider, seemed paramount. An individual’s readiness and stage of change can affect the kind of messages that are relevant and effective. In this case, R. B. required only increased awareness to enhance motivation and to move along to stages of trial and adoption. Motivation alone is not always sufficient to modify a behavior. Educational approaches that address changes in individuals only and do not consider environmental barriers to implementing a new behavior will be limited in effectiveness. Knowledge and motivation may not be sufficient to modify a behavior. P. J. was knowledgeable, but he lacked both the communication skills and the self-efficacy in his skills to act on his motivation. Individuals may be knowledgeable of their options and have a preference for a specific test. Health care providers, however, may not always be supportive of the request. In these cases, assertiveness will be required for individuals to maintain control over their health care. Although an individual may be motivated to participate in screening practices, the individual may need a cue to action and social support to implement a behavior change. Access to resources increases the ease with which a new behavior may be adopted. What an individual values may enhance, as well as hinder, attempts to influence behavior change. Social support can be extremely powerful. We know such support is an extremely powerful influence in initiating or changing a new behavior, and it is even more important with respect to maintaining a behavior change once initiated. Perceived susceptibility may be an important factor in eliciting behavior change. Increased awareness may be enough to elicit behavior change in individuals. Embarrassment and a poor relationship with one’s health care provider can seriously compromise preventive health care. A common barrier to increasing many preventive health behaviors is denial. Denial is a powerful defense mechanism that most of us use at one time or another to convince ourselves that what we are doing or not doing is acceptable. Denial is a difficult barrier to overcome because it is rooted in emotion rather than factual knowledge.

DISCUSSION

Limitations include (1) the small sample, (2) data based on self-report,19,20 and (3) data based on only the perspective of the participant, not the perspective of the primary care provider. Despite these limitations, these results provide new information about barriers to colorectal cancer screening in predominantly minority populations.

A previously unreported finding in several of the interviews was that participants encountered obstacles in obtaining the fecal occult blood test from their physicians. To date, little is known about barriers to participation by physicians in colorectal cancer screening with the home stool kit.21,22 We speculate that the barriers may include (1) lack of office personnel or systems to track requests, to mail fecal occult blood test kits to patients’ homes, and to follow up once the kit is returned; (2) concerns about patient compliance; (3) lack of knowledge about or belief in the effectiveness of fecal occult blood test–based colorectal cancer screening or the appropriate age range for colorectal cancer screening; and (4) possibly lack of reimbursement of physician time related to the test administration and tracking when done outside an office visit, despite the reimbursability of the fecal occult blood test itself. These possibilities need further exploration.

We found that the informal and unstructured educational approach used to promote patient participation in colorectal cancer screening allowed for maximum tailoring of the intervention to each individual. Tailoring permitted us to address a variety of needs for different participants. In some participants, tailoring focused on enhancing motivation (e.g., by increasing knowledge), whereas in others, emphasis was placed on addressing deficits in skills or self-efficacy through coaching and role-playing. In others, communications were tailored to provide social and emotional support, including dealing with fear and denial. We also found that even when individuals were motivated and initiated action, environmental barriers related to the availability or accessibility of the fecal occult blood test could significantly hinder their efforts to obtain colorectal cancer screening.

One of the greatest public health challenges we currently face is reducing disparities in health between social groups in the United States. Progress in reducing disparities in morbidity and mortality can be addressed by promoting preventive practices such as screening in underserved populations. We currently have little understanding of barriers to colorectal cancer screening in such populations and how they can be ameliorated. This study is intended to be one small but meaningful step in this direction by identifying issues that warrant further investigation.