Table shows the demographic characteristics of the 23 patients who were interviewed. Sixteen patients had not received colorectal cancer screening; the remaining 7 patients had either been screened (n = 3) or had received a diagnostic colonoscopy (n = 4) for workup of gastrointestinal symptoms. Most patients were female, non-white, had a low level of education, and had an annual income of less than $15,000. The mean age of participants was 60.9, and nearly all had some form of health insurance. Of the three patients who had undergone colorectal cancer screening, one had a colonoscopy, and 2 were screened by FOBT cards. We also interviewed the 10 primary care physicians of the 16 patients who had not been screened. Half of the physicians were female, most were white (n = 8), and their mean age was 46.
Patient characteristics (n = 23)
Four consistent themes emerged from our analyses of patient interviews: 1) Unscreened patients cited lack of trust in doctors as a major barrier to screening whereas few physicians identified this barrier in their patients; 2) Unscreened patients identified lack of symptoms as the reason they had not been screened; 3) A doctor's recommendation, or lack thereof, significantly influenced patients' decisions to be screened; 4) Patients, but not their physicians, cited fatalistic views about cancer as a barrier. Most patients and physicians cited more than one barrier to screening. Table lists barriers cited most frequently by patients and physicians, respectively. Below we discuss each theme in detail with illustrative verbatim quotations.
Most frequently cited barriers to colorectal cancer screening identified by patients and by their primary care physicians
Lack of trust
Five of 16 unscreened patients (3 white US-born patients, 1 African-American patient, and one white Portuguese patient from the Azores) cited a lack of trust in doctors as one of the major reasons they had not been screened for colorectal cancer. For example, a white woman from the Azores related that her husband had suffered from oral cancer: "I really don't trust doctors... I really believe that ...all the treatment just helped to kill him faster. So I always tell my daughters if, God forbid...if anything happens to me, I don't want any of that [treatment]." Her physician, a native speaker of Portuguese, recognized that a lack of trust was affecting her patient's decision not to be screened:
"It's a trust issue...She's from the Azores [part of Portugal]... going to the doctor was really a last resort when nothing else, when the local remedies...would not help...Also, we had a dictatorship in Portugal at the time, and there was a secret police as well...people grew up not knowing who to trust...they knew that they were safe within the home, but anything outside of the home was different."
A US-born white man also cited lack of trust in doctors as one of the reasons he had not been screened:
"I have issues around trust, and whether or not things will be done in my best interests...Maybe they want more operations to do. Gee we want to find out if there's more cancer because our surgeons aren't working enough. We can't give enough radiation. We want more business, so we want to look for more cancer."
While this patient's physician did not identify lack of trust as a reason why the patient was unscreened, he did correctly identify psychosocial stressors as another reason the patient had not been screened: "...all I know is he was an [older] guy who was in love with a ... [younger] woman, and was dealing with all those kinds of issues, and had recently left his wife, and it was just sort of a social mess..."
Trust in doctors was a facilitator of screening for 2 of 7 of the screened patients (1 white US-born patient and 1 Spanish-speaking patient from El Salvador). The Salvadoran woman related that she had had a good experience seeing a doctor in El Salvador for a gynecologic complaint. She said of her current primary care doctor: "I'm not planning on stopping seeing her until either I die or something happens to her that she cannot see me again."
Lack of symptoms
Five of the 16 unscreened patients (2 white US-born patients, 2 African-American patients, and one Portuguese patient from the Azores) cited a lack of symptoms as one of the reasons why they had not been screened, while 4 of the 7 patients who appeared to have been screened had in fact had diagnostic colonoscopies to work up the etiology of gastrointestinal symptoms (2 Portuguese-speaking patients from Brazil, 1 Spanish-speaking patient from El Salvador, and 1 Portuguese-Creole speaking patient from Cape Verde). An unscreened English-speaking white woman told us: "You guys want me to have an examination; I'll tell you something, I have the world's best digestive system..." At the same time, her physician cited comorbid medical illnesses as one reason she had not been screened: "She has really poorly controlled cholesterol and blood pressure, so I imagine it hasn't come up because she's so resistant to taking her blood pressure medicine..." Her physician also said, "I just know her personally, she doesn't want anything done..." A second patient, also an English-speaking white woman, related: "I only go to the doctor if something is hanging off my body or I'm bleeding..." Her physician recalled that she refused to complete FOBT cards, and added:
"I think she was sent to me because she's a psych patient and they sent her down for a primary care physician...I don't recall her having a strong motivation to see a primary care physician and get medical care... I have this vague picture of her as not highly motivated to participate in this medical intervention that was going on and in a hurry to get out and ... I think I felt that I had made a major accomplishment by telling her to go to the dentist."
A doctor's recommendation
Two of 7 screened patients (both Haitian-Creole speaking patients from Haiti) cited a doctor's recommendation as a facilitator of screening, while 5 out of 16 unscreened patients (1 white US-born patient, 3 Haitian-Creole speaking patients from Haiti, and 1 Spanish-speaking patient from El Salvador) said their doctor had not recommended screening. The importance of a doctor's recommendation, while cited by patients speaking Spanish, English, and Haitian Creole, was especially prominent among Haitian patients. Of the 5 Haitian patients who had not been screened, 3 said they had not been screened because their doctor had not recommended screening. When queried about colorectal cancer screening, one patient replied "I don't know anything about it...the doctor never asked me to do it." Both of the Haitian patients who had been screened reported that they had completed the tests based on their doctor's recommendation.
When we reviewed the medical records of the 5 patients who stated that their doctor had never recommended screening, it appeared that in 2 instances (including one in which the physician was a native speaker of Haitian Creole), a discussion about colorectal cancer screening had indeed taken place, as each physician had referred the patient for a colonoscopy. Most Haitian patients reported that if their doctor recommended screening then they would be screened. One man explained: "Doctor come [sic] after God. After God, it's doctors."
Some physicians were aware that they had not recommended screening, often because of competing priorities – their own priorities or those of the patient. For example, one physician gave the following explanation for why she had not discussed colorectal screening with her patient:
"I think she is a psychologically fragile, a very anxious lady who has been taking care of a disabled husband...And she has been quite overwhelmed. And she's also been dealing with her pulmonary condition which I think has been much more acute. So I think it's a combination of doing a lot of acute stuff and personal issues..."
Three of 16 unscreened patients expressed fatalistic views about cancer as one of the reasons they had not been screened; two of these patients were African-American men, and the third was a woman of Portuguese descent from the Azores. In each case, the physician was not aware that the patient held fatalistic views about cancer. One African-American man told us: "...Well, I don't want to [get screened for colon cancer] because, hey, you know, I mean, if you got it you got it, but they can't do anything to cure me..." His physician, when asked why the patient was not screened, replied:
"...My impression was that a lot of things got in the way of him getting screened. It seemed like in every progress note, almost every one... the colonoscopy was scheduled, but not done and rescheduled and not done... I know at one point his wife had died. He has a history of substance use, so that interfered. But to what extent his views about colon cancer screening interfered with that, I don't really have a good sense of that..."
Another African-American man, who reported that his father had died from colorectal cancer, related: "I figure if it's [cancer] going to be there it's going to be there. That's the outlook I have." This patient also reported that he was afraid of finding out that he has cancer if he gets the tests done. His physician listed several other reasons why this patient had not been screened. The physician noted a lack of connection between him and the patient, as the patient often consulted other providers at the health center. He also felt that colorectal cancer screening was a lower priority for this patient:
"...There's been the substance abuse issue, there's been a significant musculoskeletal problem... [which] kept him out of work for a long time. Precarious financial, social and home life situation, so all of those things we've been aware of and we've addressed..."
The physician also reported that the patient does not seek preventive care: "He's always come for intermittent complaints or for minor crises in his personal or his medical life. He's never been somebody who seems to have engaged in regular routine health maintenance..." The physician then added, "I don't believe... that anybody actually asked the question about colon cancer."