8: No. 6, November 2011
Elizabeth Harden, MPH; Alexis Moore, MPH; Cathy Melvin, PhD, MPH
Suggested citation for this article: Harden E, Moore A, Melvin C.
Exploring perceptions of colorectal cancer and fecal immunochemical testing
among African Americans in a North Carolina community. Prev Chronic Dis
http://www.cdc.gov/pcd/issues/2011/nov/10_0234.htm. Accessed [date].
African Americans have a lower colorectal cancer screening rate than whites and
higher disease incidence and mortality. Despite wide acceptance of
colonoscopy for accurate screening, increasing promotion of high-sensitivity stool
test screening, such as the fecal immunochemical test (FIT), may narrow racial,
ethnic, and socioeconomic disparities in screening. This study provides
formative research data to develop an intervention to increase colorectal cancer
screening among underinsured and uninsured African Americans in central North
We held 4 focus groups to explore knowledge, beliefs, and
attitudes about colorectal cancer screening, particularly FIT. Participants (n =
28) were African American adults recruited from neighborhoods with high levels
of poverty and unemployment. Constructs from the diffusion of innovation theory
were used to develop the discussion guide.
In all groups, participants noted that lack of knowledge
about colorectal cancer contributes to low screening use. Attitudes about FIT
sorted into 4 categories of “innovation characteristics”: relative advantage
of FIT compared with no screening and with other screening tests; compatibility
with personal beliefs and values; test complexity; and test
trialability. A perceived barrier to FIT and other stool tests was risk of
incurring costs for diagnostic follow-up.
Community-based FIT screening interventions should
include provider recommendation, patient education to correctly perform FIT,
modified FIT design to address negative attitudes about stool tests, and
assurance of affordable follow-up for positive FIT results.
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Screening for colorectal cancer (CRC), the second leading cause of cancer
death in the United States, leads to increased early detection and treatment of
this disease (1). Although 62% of the US population reports following
recommended CRC screening guidelines, screening rates are lower for those with
lower incomes and those without health insurance (2). Rates are also thought to
be lower among African Americans, who are more likely than other ethnic groups
to be diagnosed with late-stage CRC (2) and 40% more likely than whites to die
of CRC (3).
Adults at average risk for CRC may choose from several screening options.
Until recently, organizations that develop and issue guidelines were generally
in consensus about which tests to endorse. The US Preventive Services
Task Force (USPSTF) recommends that patients choose from among yearly high-sensitivity fecal occult blood test (FOBT) or high-sensitivity fecal
immunochemical test (FIT), flexible sigmoidoscopy every 5 years, or colonoscopy
every 10 years. Each screening regimen is clinically effective for
reducing mortality (4,5).
In 2008, the American Cancer Society (ACS), in collaboration with the US
Multi-Society Task Force on Colorectal Cancer and the American College of
Radiology, issued a slightly diverging set of recommendations, adding stool DNA
and computed tomographic colonoscopy tests. The ACS guidelines also categorize
tests according to their potential to detect versus prevent CRC. The first
category includes FOBT and FIT. The second category includes screening tests
that produce visual images of the colon and, therefore, can detect and guide
removal of adenomatous polyps, a benign precursor of most colorectal cancers,
thereby preventing them from developing into cancer (6).
With either set of guidelines, patients must choose a test that most
closely aligns with their needs and values. Each test conveys distinct benefits
and limitations related to test frequency, cost, invasiveness, sensitivity,
specificity, convenience, and regional availability. For lay and professional
audiences alike, determining the relative advantage of the various screening
tests is a complex issue.
FOBT and FIT are the least expensive options and do not require access to endoscopy facilities. Some types of FIT are increasingly preferred over FOBT
because the tests are specific to human hemoglobin and have a similarly high or
higher sensitivity (7). Vitamins, foods, and drugs do not alter FIT accuracy,
and patients may find it easier to use. Improving access to FIT has potential to
increase screening by reducing costs and removing some structural barriers, such
as geographically distant endoscopy facilities (8-12).
The objective of this study was to provide formative research data for an
intervention to increase CRC screening in a target population of underinsured
and uninsured African Americans living in a metropolitan area in central North
Carolina. We conducted focus groups with members of the target population to
explore knowledge, beliefs, and attitudes about CRC screening, particularly FIT.
Focus group data are being used to inform the design of a FIT screening
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Theoretical framework: diffusion of innovations
The diffusion of innovations theory describes the adoption of new practices
or products (innovations) and the factors that accelerate or impede their spread
throughout a community. Application of this theory during intervention planning
can help cancer prevention and control practitioners develop dissemination
strategies specific to different CRC screening tests and populations.
The theory posits that perceptions of an innovation’s characteristics affect
how quickly and widely the innovation is adopted. Five attributes that explain
49% to 87% of variance in adoption rates are relative advantage, compatibility,
complexity, trialability, and observability (13). Relative advantage is the
degree to which a potential user perceives the innovation as superior to the
practice that it supersedes. Compatibility refers to the beliefs about whether
the innovation is consistent with personal values. Complexity is the extent to
which the user perceives the innovation as difficult to use. Trialability is the
degree to which someone can experiment with the innovation before adopting it.
Potential users can also conduct a vicarious trial by observing and learning
from someone else’s experimentation (13). Observability is the extent to which
results of adopting an innovation are visible to others. Modifying FIT in ways
that affect perceptions of these 5 attributes in the target population can
enhance or diminish its diffusion potential. Intervention planning also requires
audience and community assessment research to understand how an innovation is
likely to interact with individual and environmental
characteristics. Elements in the diffusion of innovation theory guided the
organization and presentation of the focus group results.
Starting in January 2007, a local community research advisory board, a
standing group that advises about research projects in several North Carolina
counties, reviewed the research protocol, recommended appropriate honoraria for
participants, and guided the research team in disseminating results locally. The
institutional review board of the University of North Carolina at Chapel Hill
also approved this study. Community organizations assisted in early spring 2007
by posting flyers and allowing study staff to attend their outreach events to
recruit and enroll participants. Potential participants contacted research staff
in person at these events or by telephone after seeing recruitment materials.
Two study staff administered brief eligibility surveys and enrolled
Eligible participants were African Americans aged 50 years or older who
were not at elevated risk for CRC because of a family history of CRC in a
first-degree relative or a personal history of the disease. Those screened by FOBT or FIT within the past year or by any
endoscopy method or contrast barium enema within the past 5 years were excluded.
Of 51 people who completed eligibility screening, 16 were ineligible because of age
or recent screening. Thirty-five eligible people received assignment to a male
or female focus group session (there were 2 of each), a confirmation letter, and a reminder letter and
telephone call. Of those, 28 attended 1 of 4 two-hour focus groups and completed
a brief demographic questionnaire in March 2007. Focus groups of 5 to 9 people
were conducted at 2 African American churches of different denominations and at
a community resource center. The churches and the resource center were
recommended as neutral sites that were likely to be familiar and geographically
accessible to participants. Eligible participants chose to attend either a
weekend morning or weekday evening focus group. The study covered taxi costs
for participants without transportation. All participants received a $30 gift
Focus group members gave written consent for their participation. A trained African
American facilitator of the same sex as participants moderated the focus groups.
All groups were tape recorded. Facilitators followed a semistructured guide with
preset probes (Appendix) to ensure conversation depth. The moderator began with
questions about participants’ knowledge and attitudes about CRC and screening.
After distributing a 3-sample Hemoccult ICT packet, an FIT manufactured and
donated by Beckman Coulter, Inc (Brea, CA), the moderator asked participants to examine the
packet and share opinions about its design, packaging, instructions, and
usability. The moderator also asked participants questions about community
characteristics and local health services, and participants were able to ask
questions or raise topics that they thought were important but had not been
Verbatim transcription of audio recordings produced 191 pages of text. The first author
used Atlas.ti software (Atlas.ti Scientific Software Development GmbH, Berlin,
Germany) to conduct a content analysis followed
by thematic analysis. Content analysis examined the degree of consensus in
responses to questions and generated a list of codes that defined overarching
themes. The analyst coded and ranked each comment from most to least frequently
mentioned. A second analyst also reviewed transcripts, and differences in the
analyses were resolved.
Thematic analysis entailed grouping codes by themes, which were defined by
elements of diffusion of innovation theory. Qualifying findings had to emerge in
at least 2 groups. A finding’s strength increased if it
occurred in 3 or all 4 groups. To count as a finding for women, a code had to occur in both women’s
groups, and likewise for the men. During thematic analysis, the analyst
abstracted quotes that illustrated findings.
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Half of study participants reported an annual income of less than $10,000 (Table).
Twenty participants reported having a regular health care provider, yet only 13
had ever spoken with a provider about CRC. More women than men reported
talking with a health care provider about CRC.
Themes are presented in terms of individual, innovation, and environmental
characteristics that, following diffusion of innovation theory, are likely to
influence FIT adoption. Comments about FIT aligned with 4 of the 5 innovation
characteristics believed to predict adoption: relative advantage of FIT
compared to no screening or other CRC screening, compatibility of FIT
with personal beliefs and preferences, complexity of the FIT procedures,
and strategies to enhance FIT’s trialability. Participant comments did
not directly address the innovation’s observability; however, the low
profile of CRC screening emerged as a related theme.
Individual characteristics: awareness and knowledge of CRC and CRC
Across all groups, awareness and knowledge of CRC and screening were low.
Female participants said that CRC screening is discussed less frequently than
breast or cervical cancer screening.
You know, you do tell people “I went for a mammogram” because one of the
things that women do discuss when they go for a mammogram is . . . how the test felt,
you know, what was done. We talk about Pap[anicolaou] smears. But I just never, ever heard
anybody say anything when they go for their physical about [CRC screening].
(Woman, group C)
Innovation characteristics: perceptions about FIT screening
Most participants noted that finding cancer early is beneficial relative to
late diagnoses, and most indicated that FIT screening was preferable to other
CRC screening tests. Several men said that they liked the idea of a home test
There was a time I was, uh, the doctors wanted to take that [colonoscopy] for
me and I wouldn’t allow them because that’s a part of my body. I just, just can’t
see nobody doing what they do. So, I told them “Ain’t there no other way you can
test it?” (Man, group A)
When differences between FOBT and FIT were discussed, FIT was preferred
because it requires no food restrictions.
Negative attitudes about FIT were due mostly to perceptions of the test as
“gross.” Women expressed more reluctance about collecting and storing stool
samples than men and noted that people may be deterred by smelly odors or
embarrassment when returning the samples. All groups discussed problems
associated with storing stool samples. Some recommended adding a device to hold
used sample cards until they go to the lab.
No one thinks to let it dry completely overnight. So, I guess you have to put
this someplace where — I don’t know — You know, because you got to let it dry
completely, and you don't want to just leave it on the sink. (Man, group D)
Participants also said stool tests are a good screening option for those
preferring home remedies to medical services.
Participants generally approved of the appearance of FIT packaging; however,
they thought that the thin, lightweight materials could easily be overlooked or
If I don’t really have an understanding of how important it is, I’ll just
discard it, you know, because it looks like another piece of mail. So, it just
goes in the garbage can with all my other mail. (Man, group D)
Although most said FIT is a simple procedure, in every group participants
said FIT’s multistep instructions would challenge some. Instructions in small
type were acknowledged as a potential problem for low literacy patients. Not
understanding the rationale for each step of the FIT procedure, which is
performed over several days, bothered some participants: “Okay, you’re gonna put 2
[pieces of stool] on it, 1 for the bottom, 1 for the top. Then you’re going to
smear [them] together. For what?” (woman, group B). Another participant said,
“All the processes . . . Lift the toilet seat. Attach it to fit you. Measuring tissue.
. . . You know, it’s a lot to do. A lot to do for me”
(man, group A).
shared similar concerns.
I think before they give a person a kit like that, they just educate
them on why they’re doing it and what they should do, what they’re going
to be looking for. ’Cause if they just give it and tell them to take it
home, bring their stool sample back, I mean they haven’t told them
nothing. (Woman, group B)
A few had previously tried and completed a 3-sample FOBT. One man explained
that “there’s nothing to it” (group D). Another participant described how a
female health care provider helped him practice a test procedure before he attempted
They went through the whole thing with me. Cause I didn’t know exactly how to
do it. Cause I can read and I can guess. . . . She said, “I’m gonna sit here and
we’ll go through the whole process.” Then you know exactly what to do.
(Man, group D)
In addition to hands-on instruction, video or illustrations were suggested by
the participants to improve adherence to test procedures.
The silence surrounding CRC was discussed in all groups. One woman (group C) compared the
invisibility of CRC screening with other screenings: “We hear a lot about
mammograms . . . we hear a lot about cervical cancer . . . and the importance of Pap[anicolaou] smears. But we don’t really hear a lot about colon cancer.” Although benefits of early detection or prevention of cancer are not easily
observed, negative consequences of late-stage cancer diagnosis are, prompting
such remarks as “a lot of people [are] afraid of taking the necessary steps as
far as being examined. I guess they’re scared of what they will find out” (woman,
Environmental characteristics with potential to affect FIT screening
Lack of provider recommendation appeared as a screening impediment: “If the
doctor tells me this [FIT] is something I must do, or I have to do it, I just
have to humble myself and get it done. But until that time, man, I’ll just take
my personal beliefs and use them” (man, group A). Participants described
physicians as important health information sources, yet rarely discussed CRC
with a doctor.
Health care cost and access
Even if free CRC screening were available, participants said they might opt
out unless affordable follow-up is assured. In the absence of diagnostic care
and treatment, screening may be pointless: “The cost factor. If I do [have
cancer], I can’t afford to continue with the treatment or whatever is needed to
be done. Therefore, if I don’t start and I don't know, I won’t have to follow
through” (man, group A).
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The National Commission on Prevention Priorities ranked CRC screening as the
fourth most valuable clinical preventive service that medical practices can
offer (14). Although some tests, particularly colonoscopy, have ardent
supporters, most people agree that USPSTF- or ACS-recommended tests increase
early detection of CRC (1,15) and that patients should be able to choose a test
they prefer. Results from published studies indicate that patients do not
unanimously favor one test over another; some studies indicate FOBT and FIT are
least preferred (16,17). Others show some patients preferring stool tests over
colonoscopy (9,18). Findings from our study suggest that FIT is perceived as an
acceptable or preferred CRC screening test relative to other screening tests,
including colonoscopy. Fisher et al (12) report that using annual
stool tests for primary screening would allow 100% of the age-appropriate US
population to be screened at a savings of nearly $10 billion per decade from
what is currently spent to screen only half the targeted population. For
cancer prevention and control planners working to extend CRC screening to
underinsured and uninsured patients, our findings suggest FIT is viable for
community screening. Participant comments exposed factors that could impede
widespread adoption and should be taken into consideration when planning
screening programs that include FIT.
Complexity of test procedures emerged as a concern. For innovations requiring
acquisition of new skills, diffusion tends to be slow (13). FIT screening
entails following multistep instructions over a span of several days. Other
studies have found that people often lack skills and confidence to successfully
complete stool tests (11,19,20). Another focus group study reported that clearer
instructions about test procedures would improve participation rates (11).
Similarly, participants in our study recommended adding instructions in large
type and illustrations of test procedures.
Participants also recommended hands-on practice sessions using sample
materials or video demonstrations. In addition to reducing complexity, these
activities address the concept of trialability by allowing patients to try FIT
before committing to using it at home. Three-sample FIT and FOBT are already
designed with a certain degree of trialability: patients can gain confidence in
doing the test as they attempt to collect a sample each day. Although test
accuracy decreases with an incomplete sampling, 1 or 2 samples can still be
analyzed. The next year, the patient will have another opportunity to perform
Our focus group participants indicated that handling or mailing stool samples
is embarrassing and mildly offensive, hence incompatible activities. Similar
attitudes have been reported about FOBT (20-22). In an Australian study of FOBT
use, the 2 main reasons, together accounting for almost 50% of reasons for
nonadherence, were perceived unpleasantness and inconvenience (22). Participants
in our study noted that merely adding a storage device to securely contain fecal
samples until they are returned to the doctor may make FIT more acceptable.
In addition to the innovation characteristics of FIT screening, the public’s
low awareness of stool testing may impede adoption (11,19,20,23,24). The
effectiveness of mass media interventions for increasing CRC screening deserves
further research (25); however, the most important source of information about
CRC screening is health care professionals (23,26). Although physician
recommendation for screening is a leading predictor of screening adherence
(23,26), only 13 of 28 participants in this study had talked with a health care
provider about CRC. Physicians have reported not recommending CRC screening to
uninsured patients if access to diagnostic care is lacking (11). Participants
noted that FIT screening has little value unless diagnostic follow-up services
are available and affordable. In regions where CRC screening programs do not fund screening and diagnostic colonoscopy for the underinsured and uninsured,
adhering to CRC screening guidelines is a challenge.
Focus group data, while offering great depth and detail in response to
research questions, cannot be generalized beyond the sample. In our study,
convenience sampling and the small sample size further decreased
generalizability of the results. Also, only 1 researcher coded the content
analysis, potentially decreasing the validity of our findings.
CRC disproportionately affects the lives of African Americans, and screening
rates must be increased to reduce the number of African American lives
lost to the disease. Findings from our study and others indicate that FIT is a
viable option for more widespread population-based CRC screening.
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Research for this publication was supported by the Centers for Disease
Control and Prevention and the National Cancer Institute (NCI) cooperative
agreements for the Cancer Prevention and Control Research Networks at the
University of North Carolina at Chapel Hill, Center for Health Promotion and
Disease Prevention (5-U48-DP000059). The authors also acknowledge Andrea Meier,
PhD, Allan Steckler, PhD, and Jennifer Leeman, DrPH, for consultation on this
research and Jennifer Scott for administrative support. We also thank staff and
community collaborators of the Carolina Community Network (CCN), an NCI Center
to Reduce Cancer Health Disparities, Community Networks Program (grant no.
U01CA114629). Thanks also to CCN community outreach specialist Brandolyn White,
MPH, and CCN collaborators in the community, including Ms Kathy Norcott.
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Corresponding Author: Alexis Moore, MPH, Lineberger Comprehensive Cancer Center,
University of North Carolina at Chapel Hill, CB# 7295, Chapel Hill, NC
27599-7295. Telephone: 919-843-7027. E-mail:
Author Affiliations: Elizabeth Harden, Cathy Melvin, University of North
Carolina at Chapel Hill, Chapel Hill, North Carolina.
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