Perspectives of African Americans and dentists concerning dentist–patient communication on oral cancer screening

Patient Education and Counseling 71 (2008) 41–51 www.elsevier.com/locate/pateducou

Perspectives of African Americans and dentists concerning dentist–patient communication on oral cancer screening Youjin Choi a,*, Virginia Dodd b, Jennifer Watson c, Scott L. Tomar c, Henrietta L. Logan c, Heather Edwards a b

a College of Journalism and Communications, University of Florida, FL, USA Department of Health Education & Behavior, College of Health and Human Performance, University of Florida, FL, USA c Department of Community Dentistry and Behavioral Science, College of Dentistry, University of Florida, FL, USA

Received 3 June 2007; received in revised form 8 October 2007; accepted 14 November 2007

Abstract Objective: Mortality rates for oral cancer have not improved appreciably in decades, with Blacks less likely than others to survive 5-years posttreatment. Oral cancer is the fifth most common cancer among African American males, representing a pressing public health concern. This study compared how dentists and African American adults view the current state of dentist–patient communication regarding oral cancer and its detection. Methods: Five focus groups with 56 African American adults and two focus groups with 17 dentists were conducted in order to compare responses regarding oral cancer information needs and dentist–patient communication on oral cancer screening. Results: African American adults showed little knowledge about oral cancer and cancer screening, and great need for information. However, dentists reported rarely engaging in information exchange with their patients even while performing the examination. Conclusion: African Americans’ request for screening information and dentists’ reticence about performing the screening and initiating communication with patients indicate a need for both public education on oral cancer and improved continuing education courses for dentists. Practice implications: The dental care community should develop clear guidelines for communicating with patients about oral cancer and engage in continuing education on oral cancer screening procedure. Increased public health efforts aimed at increasing oral cancer awareness and knowledge among the public are warranted. # 2007 Elsevier Ireland Ltd. All rights reserved. Keywords: Doctor–patient communication; Screening; Oral cancer; Ethnicity

1. Introduction An estimated 34,000 new cases of oral cancer and 7500 deaths from oral cancer will occur in the United States in 2007 [1]. Compared with Whites, African Americans experience higher incidence rates and much higher mortality rates from oral cancer [2]. In 2004, the age-adjusted incidence rate for oral cancer was 15% higher among African American males than among White males (18.1 vs. 15.7 per 100,000), but African American males’ age-adjusted mortality rate was nearly twice as high as for White males (6.8 vs. 3.8 per 100,000). Oral cancer

* Corresponding author at: College of Journalism and Communications, University of Florida, PO Box 118400, Gainesville, FL 32611-8400, USA. Tel.: +1 352 392 9961; fax: +1 352 273 1227. E-mail address: [email protected] (Y. Choi). 0738-3991/$ – see front matter # 2007 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2007.11.011

is the ninth most common cancer among White males and the fifth most common cancer among African American males [3]. The overall survival rate for oral and pharyngeal cancer is one of the lowest of all malignancies in the United States, including cancers of the prostate, breast, colon and rectum, and skin [2]. Risk factors for oral cancer include cigarette smoking, alcohol use [4], other forms of tobacco use [5,6], low consumption of fruit and vegetables [7–10], sun exposure [11], and specific viral infections [12,13]. However, differences in known risk factors do not fully explain the disparities in the rates of oral cancer between African Americans and Whites [14–16]. Discrepancies in the rate of detection of oral cancer may partially explain disproportionately high mortality rates for African American men. Oral cancer tends to be diagnosed at later stages in African Americans than in whites [17,18]. For example, in 1996–2003, 20% of tumors were diagnosed at localized stages among African Americans compared to 35% of

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tumors among whites. In contrast, African American men were more likely (17%) than white men (10%) to have distant metastasis at the time of diagnosis. African Americans’ less frequent contact with dentists than Whites might be one reason for that disparity in oral cancer detection. In 2004, about 64% of American adults visited a dentist in the past year, including 68.1% of non-Hispanic whites, 49.6% of Hispanics, and 57.3% of non-Hispanic blacks [19]. In addition, African Americans and Whites may receive different types of cancer treatment even when cancers are diagnosed at the same stage and anatomic site. For example, several studies found that African Americans were consistently less likely than whites to get cancer-directed surgery across tumor site and stages [17,18]. A racial disparity study regarding oral cancer in Florida found that the racial difference in type of oral cancer treatment persisted even after adjustment for type of health care coverage [20]. Earlier detection of oral cancer could greatly improve survival rates. Five-year relative survival rates vary dramatically by stage at diagnosis, ranging from more than 82% for tumors diagnosed at localized stages to less than 25% for those that have metastasized to distant sites [2]. An oral cancer exam can be done by a dentist or a dental hygienist. The exam includes careful visual inspection of a patient’s jaw, throat, neck, lips, tongue and entire mouth, as well as palpation of the inside and outside of mouth and the neck to detect any lumps or abnormalities [21]. While the American Cancer Society [22] and Healthy People 2010 [23] recommend that people with high risk factors and those older than 40 receive an annual oral cancer exam, only 15% of patients ages 40 and older report being screened for oral cancer [24,25]. In contrast, 81% of dentists claim they screen all their patients 40 years or older at their initial appointment [11]. This apparent discrepancy may reflect a lack of communication between dentists and their patients. The lack of communication can be another barrier for African Americans even if they visit a dentist. Oral cancer studies conducted in various states [26–28] indicated that awareness of oral cancer and knowledge about its risk factors, signs and symptoms were not prevalent. Two studies found that disproportionally affected population segments such as low education and minority groups showed less knowledge on oral cancer and its exam [26,27]. In one study [28], the primary reason cited for not having an exam was that it had been not been recommended from doctors and dentists. Thus, it is critical to see how dentists and patients communicate oral cancer and screening information. Taking into account the higher oral cancer incidence rates and higher mortality rates of African American men, this study conducted focus groups with African Americans and dentists. The overall purpose was to assess how dentists view the need or dentist–patient communication on oral cancer and screening and how their views compare to African Americans’ views. This study pursued three research objectives: (1) to examine African Americans’ knowledge about oral cancer and screening information needs, and dentists’ estimates of these information needs, (2) to probe the current state of information exchange and perceptions of dentist–patient communication on oral

cancer from both sides, and (3) to identify oral cancer screening barriers for both dentists and patients. 1.1. Perceived information needs and doctor–patient communication Doctor–patient communication is indicative of doctor– patient interaction and doctor–patient relationship because the major purposes of doctor–patient communication include interpersonal relations, information exchange and treatment decision [29,30]. Doctors’ characteristics such as perceived importance of health information delivery and self-confidence affected their choice of communication style and consequentially patients’ understanding of health information [31]. Patients’ social economic status (SES) was found to be related to doctors’ communication styles and their estimate of patients’ information needs [32–34]. Doctors hold inaccurate beliefs about the amount of information low SES or racial minority patients want to have, thinking that these patients may not understand the complex information and would prefer for the medical professionals to make more decisions for them. Patient communication style and the degree of information exchange are affected by patient demographics and their information needs as well [34–37]. Racial minority patients tend to ask fewer questions and receive less detailed medical information [35,37]. In particular, African Americans may be less likely to seek medical help or engage in proactive health behaviors like disease screenings due to distrust of the medical establishment [38]. Tuskegee has served as a metaphor for deceit, discrimination, and even racial genocide [39], even among African Americans who do not know the specific details of that event [40]. The literature indicates that African Americans’ mistrust of medical establishments and healthcare providers’ cultural incompetence including underestimate of information needs are responsible for racial disparities in health information gains and doctor–patient communication [35,37,41]. Thus, this study examined perceived information needs of dentists and African American patients and their connection to dentist–patient communication. 1.2. Co-orientation between healthcare providers and patients The objectives of this study focus on comparing perceived information needs and views on the current state of dentist– patient communication on oral cancer from dentists’ and African Americans’ sides. One possible explanatory paradigm for this dyadic relationship is the co-orientation model of communication. This model describes how two parties view an object of mutual interest and perceive the other’s assessment of that object [42]. Congruency [43] is defined as the level of correspondence between one group’s views on an object and its estimate of the other group’s view of the same object. Correct predictions about the other’s views can facilitate a collaborative communication process; inaccurate predictions can significantly alter or impede the communication process. Ogden [44] studied obese patients and their doctors for views on who is

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responsible for solving obesity. The general practitioners held the view that the solution should come from the patients themselves whereas patients believed that external solutions were needed. Andreassen compared patients’ information needs with healthcare providers’ estimate, and found that healthcare professionals’ underestimate of the amount of information exchange can become an obstacle for provider– patient interaction [45]. Healthcare providers usually underestimate the information needs of patients and tend to provide less information than what patients require [45–47]. With likely gaps between healthcare providers’ and patients’ views on information needs taken in consideration, this study extended the co-orientation study into the context of oral cancer information. Research into African Americans’ communication with healthcare providers (dentists in this case) and their information needs might illuminate their expectations of communication with dentists and dentists’ roles as health information providers. In addition, this study explored barriers to oral cancer exams and suggestions on eliminating the barriers from both sides. 2. Methods Trained focus group moderators conducted five focus groups with African American adults and two focus groups with dentists in Jacksonville, FL. A professional research firm was hired to recruit focus group participants. Each focus group was audio and video recorded, and lasted approximately 60 min. In accordance with Institutional Review Board guidelines all focus group participants gave both verbal and written consent to participate in the study and to be audio recorded and videotaped. 2.1. African American focus group recruitment and interview protocol The research firm primarily used lists of people who had volunteered to participate in focus groups and identified themselves as African American residents of high-density African American communities (determined by specific zip codes) in Jacksonville. Random digit dialing was used to supplement that list. In total, five African American focus groups –3 males and 2 females– were conducted with a total of 56 African American adults. Two focus groups (N = 24) consisted of men ages 35–50 years and one (N = 8) was comprised of men ages 51–75 years. One focus group consisted of women (N = 12) ages 35–50 years and the second group (N = 12) consisted of women ages 51–75 years. Educational attainment ranged from those with less than a high school education to college graduation or beyond, and annual reported income ranged from under $15,000 to $75,000. Three of the male participants and two of the female participants were smokers, but none used chewing tobacco. One male participant reported having been diagnosed with lung cancer and one female participant reported being diagnosed with breast cancer. No participants were employed in the dental field. Table 1 illustrates basic characteristics of the African American participants.

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Table 1 Characteristics of African American focus group participants (N = 56) Characteristic

Number

Percenta

Sex Female Male

24 32

43 57

Age (years) 35–50 51–75

36 20

64 36

Education level
1 18 21 14 2

2 32 38 25 4

Annual income Under $15,000 $15,000-$35,000 $35,000-$50,000 $50,000-$75,000

6 19 17 14

11 34 30 25

Dentist visit in the past year Yes No

41 15

73 27

Smoking status Current smoker (cigarettes) Oral tobacco use

6 0

11 0

Alcohol use None
33 20 3

59 36 5

History of cancer Yes No

2 54

4 96

a

Due to rounding not all percentage totals equal 100%.

We asked participants about their knowledge of oral cancer, perceived susceptibility to oral cancer, experiences with oral cancer exams, dentist–patient communication concerning oral cancer exams, and barriers to receiving an oral cancer exam. Table 2 lists focus group questions for African American participants. The female focus groups were conducted by a Table 2 African American focus group question items 1. 2. 3.

4.

5.

Awareness of oral cancer risk factors: When I say ‘‘oral cancer’’ or ‘‘cancer of the mouth and throat’’ what do you think of? Susceptibility to oral cancer: Do you think you are at risk for oral cancer? Experiences with oral cancer exams and communication on oral cancer exams: Has anyone ever suggested that you have an exam for mouth and throat cancer? Who? Information needs of oral cancer and its exam: How can I describe mouth and throat cancer exams so that everyone can understand what they are for?; How important is it to know exactly every step that will be done during an oral cancer exam?; How important is it for me to describe exactly what will be done? Perceived barriers of receiving an oral cancer exam: Can you identify any barriers associated with getting oral cancer exams? What can I do to make it easy for you to have an oral cancer exam?

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professionally trained African American female moderator, and the male focus groups by an African American male moderator. All participants were paid $75 for approximately 60 min of their time.

Table 4 Dentist focus group question items 1. 2.

2.2. Dentist focus group recruitment and interview protocol 3.

The research firm contacted dentists who practiced in areas densely populated by African Americans (determined by the same zip codes) in Jacksonville. Two focus groups with a total of 17 dentists were conducted by a trained white female moderator who was also a member of the research team. The dentists were paid $200 for approximately 60 min of their time. These dentists, given their practice locations, could potentially be dental providers for people from the target community represented by the African American focus groups. Their practice tenure ranged from 5 years to more than 20 years. Three of the participants described themselves as African Americans and six were women. Dentists were asked to estimate public awareness of oral cancer, and provide information relating to dentist–patient communication concerning oral cancer exams and barriers to performing oral cancer exams. Table 3 describes basic characteristics of the dentist participants and Table 4 lists focus group questions for dentists. 2.3. Data coding and analysis The focus group recordings were transcribed verbatim by a professional transcriber and reviewed by research team members for accuracy. After the transcripts were reviewed, research members created a list of themes from the responses to each question.

4.

5.

Estimate of public knowledge of oral cancer: How much do you think the general population knows about oral cancer? Oral cancer exam: When do you perform oral cancer exams on your patients? (all patients, new patients, each visit, whenever time available). Has a patient ever specifically requested an oral cancer exam? Communication on oral cancer exams; When you perform oral cancer exams what do you tell your patients? Receptivity to an oral cancer exam and communication on the exam; How receptive are patients to information about oral cancer? What about receptivity to the oral cancer exam itself? Perceived barriers of performing oral cancer exams: Can you identify any barriers associated with performing oral cancer exams? What can we do to remove the barriers associated with performing oral cancer exams? Would you like to receive additional training in performing oral cancer exams?

Four trained graduate research assistants analyzed the transcripts; two students analyzed the African American focus group transcripts and the other two analyzed the dentist focus group transcripts. The graduate students were closely involved in every step of the research process, from observation of the focus group sessions to transcript review and analysis. The research assistants used the coding themes to extract subject matter, documented the frequency of appearance of each theme, and included any quotes relevant to the theme by using Excel spreadsheets. After comparing coding results, two research members examined inconsistent coding. Specific quotes relevant to the major themes are listed in Table 5. This study was reviewed and approved by the University of Florida Health Science Center IRB. 3. Results 3.1. African Americans’ knowledge about oral cancer

Table 3 Characteristics of dentist focus group participants (N = 17) Characteristic

Number

Percent a

Sex Female Male

6 11

35 65

Race/Ethnicity White African American Hispanic Asian American

10 2 1 4

59 12 6 24

Age (years) 25–34 35–44 45–54 55–64

3 4 7 3

18 24 41 18

Years in practice 1–5 6–10 11–20 >20

4 4 3 6

24 24 18 35

a

Due to rounding not all percentage totals equal 100%.

There was a general lack of knowledge about oral cancer and the oral cancer screening process among African American participants. When they were asked to share what they think upon hearing oral cancer, they mentioned risk factors for oral cancer. Only one group with females ages 50 and 75 discussed signs and symptoms of oral cancer. Overall, respondents were only certain of smoking and smokeless tobacco use as risk factors for oral cancer, although they cited alcohol consumption as something they think of. Male participants were more likely to identify alcohol and tobacco as risk factors than were women. Other risk factors tentatively offered included exposure to chemicals in the air and food, asbestos exposure, mouthwash use (related to the alcohol content), stress and oral contact. Among the male respondents, perceived personal susceptibility was divided between non-smokers and smokers, with smokers feeling more susceptible. Among former smokers, feelings of susceptibility were low. Several of the male participants reported having had acquaintances that died from throat cancer and one respondent stated a belief that he may have throat cancer.

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Table 5 Representative quotes from patients and providers African Americans

Dentists

Signs and symptoms of oral cancer ‘‘Sores in the mouth’’ (FG4) ‘‘Losing your teeth’’ (FG4) ‘‘Tumors’’ (FG4) ‘‘Infections of the gum’’ (FG3 & 4) ‘‘Death’’ (FG4) ‘‘Facial disfigurement’’ (FG3 & 5)

Estimate of public knowledge ‘‘I don’t think it creates the sensations that say breast cancer or other cancers.’’ (FG6) ‘‘I don’t know, I mean do any of you ever have patients asking about oral cancer?’’ (FG6) ‘‘I don’t think oral cancers are in the forefront of their consciousness.’’ (FG7) ‘‘They know if they smoke they got lung cancer. They never really thought they could get cancer in your mouth.’’ (FG7)

Knowledge about risk factors ‘‘Smoking’’ (FG1–5) ‘‘Chewing tobacco’’ (FG1–5) ‘‘Dipping snuff’’ (FG1–4) ‘‘Cigar’’ (FG1, 3) ‘‘Drinking’’ (FG1–3) ‘‘Sexual activities’’ (FG1, 2, and 4) ‘‘Poor dental hygiene’’ (FG1, 2, and 5) ‘‘Cancer run in your family’’ (FG2–5) ‘‘Food’’ (FG1–3) ‘‘Chemicals’’ (FG1) ‘‘Air pollution’’ (FG 1 and 3) ‘‘Stress’’ (FG2) ‘‘Inhaling different fumes’’ (FG4) ‘‘Mouthwash that’s high in alcohol’’ (FG4) Susceptibility to oral cancer ‘‘I haven’t really given it much thought.’’ (FG1) ‘‘I know I am at risk. I’m just a fool. You know I keep smoking. I know I am at risk.’’ (FG1) ‘‘The older you get the more you realize that you gotta protect yourself.’’ (FG1) ‘‘I feel like we all may be at risk’’ (FG1–5) ‘‘I never knew it was that prevalent.’’ (FG2) ‘‘Anything is possible.’’ (FG4) ‘‘. . . all the women in my family have had cancer. . .So I think I’m at risk.’’ (FG4)

Public’s low perceived susceptibility ‘‘. . .more of it is not going to happen to me rather than lack of knowledge.’’ (FG6) ‘‘Most cannot really identify with someone who’s had oral cancer, so I think if you don’t know someone who’s had it, the fear factor seems not to be present.’’ (FG7) Public’s lack of concern ‘‘People who dip or chew tobacco are more aware than smokers, who think they’ll get lung cancer, but they’re not really worried about oral cancer.’’ (FG6) ‘‘. . .at least the smoker groups are not kind of surprised.’’ (FG6) ‘‘Most people that use dip or smokeless tobacco have been told but don’t seem to be too concerned.’’ (FG7) Association of oral cancer with physicians ‘‘A lot of my people never associated oral cancer with going to the dentist. It’s something you go to the doctor for, that’s not something you go to the dentist for.’’ (FG7) ‘‘Because it’s such a new thing that dentists are doing now, they’re unfamiliar with it.’’ (FG7)

Mistrust of the medical system ‘‘Doctors look at us as a block of money.’’ (FG1) ‘‘You know, I’m a doctor, and I know everything, and you don’t know anything, you’re the patient.’’ (FG1) ‘‘Even Black doctors will look down on you.’’ (FG1) ‘‘I don’t want a doctor to treat me like I am on an assembly line.’’ (FG1) ‘‘They don’t care about us or they’re just not concerned that we may be in a high risk category where we may be susceptible to this type of disease.’’ (FG2) Experiences with oral cancer exams ‘‘I’m just finding out that I’ve been having an oral cancer exam every 3 months, but I didn’t know it was an oral cancer exam.’’ (FG1) ‘‘I didn’t know what he was checking. I thought he was checking for swelling and ears, nose and throat.’’ (FG1) ‘‘Mine never said it.’’ (FG2) ‘‘. . .have never done an oral exam on me that I’m aware of or mentioned it.’’ (FG2) ‘‘This is my first time hearing about it.’’ (FG3) ‘‘I’m not sure, I’ve had dental work done, you know they never tell me.’’ (FG4) ‘‘They’re always doing it so I figured, like, that’s part of it. . .’’ (FG4) ‘‘So why wouldn’t they tell you I wonder?’’ (FG5) Needs for oral cancer and screening information ‘‘Statistic rate to African Americans’’ (FG1, 3, & 4)

Oral cancer exam as a routine ‘‘For those people that come in every 6 months or 3 months, I think I may mention it once, and that’s about it.’’ (FG6) ‘‘Every time I’m doing the oral cancer exam, I assure them that this is a routine to see if there is something suspicious.’’ (FG6)

Describing oral cancer exam to patients ‘‘Anything that looks unhealthy’’ (FG6) ‘‘Something looks funny’’ (FG6 & 7) ‘‘Something that has gone undiagnosed’’ (FG7) ‘‘I don’t use the word cancer.’’ (FG6) ‘‘If you see anything abnormal, definitely need to inform them.’’ (FG7) No need to explain oral cancer exam

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Table 5 (Continued ) African Americans

Dentists

‘‘If there’s information that says you are more susceptible as an individual through you know heredity or occupation or habits. . .’’ (FG1) ‘‘That’s why it’s so important when you fill out that questionnaire that they give you about smoking and drinking so they know what different things to target.’’ (FG2) ‘‘If they told me I was high risk or something then I’d definitely get that exam and get this under control.’’ (FG2) ‘‘Just make it clear to me why you’re doing it and what you’re looking for.’’ (FG3) ‘‘I don’t need to know step-by-step, as long as I know why.’’ (FG3) ‘‘We have to understand. Anytime you have an exam you want to know what somebody is going to do.’’ (FG3) ‘‘Everything’’ (FG3 & 4)

‘‘If they ask me, I will tell them. Otherwise I don’t.’’ (FG6) ‘‘I don’t. I just basically screen for it’’ (FG7) ‘‘I wouldn’t say that I specifically tell them what I’m doing on recall.’’ (FG7) ‘‘I’ll send them a letter that says you should do this, at least get it in writing protecting my own self.’’ (FG6)

Patients’ low receptivity ‘‘. . .even if you’re doing it, if you don’t tell them what you’re doing, they don’t really pay much attention to you what you’re doing.’’ (FG7) ‘‘They’re invincible at that age.’’ (FG7) ‘‘If they think they’re going to be dead in 6 months, they don’t care what you tell them.’’ (FG7) ‘‘They don’t want to confront it. And they want to be, avoid it as much as they can.’’ (FG7) Communication on risk factors ‘‘They think they have a sore or something that’s been irritating them. Then they want to know if it could be cancer.’’ (FG6) ‘‘. . .if they’ve had another family member that’s experienced some form of cancer.’’ (FG6) ‘‘Most of them don’t come out and say, I need a cancer screening.’’ (FG7) ‘‘Usually only if they’re aware of a problem.’’ (FG7) Communicating with high risk patients ‘‘Apparently smokers and heavy drinkers don’t want to hear about it.’’ (FG6) ‘‘I tell them that they are most likely going to get cancer because they smoke, drink or chew. However, I don’t tell them to quit smoking.’’ (FG6) ‘‘I figure they know they should stop.’’ (FG7)

Barriers to receiving an exam ‘‘His (doctor’s) attitude towards me.’’ (FG1) ‘‘. . .how are you going to pay for it.’’ (FG1 & 3) ‘‘Probably none of us here had oral health at the top of our agenda.’’ (FG2) ‘‘. . .because it was never told to me’’ (FG2) ‘‘. . .fearful (or scared) of dentists.’’ (FG2—5) ‘‘Lack of knowledge’’ (FG3) ‘‘. . .not having enough information you become very skeptical.’’ (FG3) ‘‘A lot of times there’s a disparity and the services are just not available.’’ (FG4) ‘‘A lot of people do not have dental health care.’’ (FG.4) ‘‘People, 90% of people who’s working already have their dentist so, therefore you only gonna make them understand the fact that they need to do this’’ (FG4)

Barriers to performing exams and communicating with patients; Time and potential profit losses ‘‘I don’t tell them because it may take a little bit longer.’’ (FG6) ‘‘. . .if you have more time, you’ll spend more time on them, and make sure you’re feeling every little thing and checking every little spot otherwise you’re kind of just zipping through.’’ (FG6) ‘‘My hygiene department probably couldn’t pay for a front desk person and do all that other work.’’ (FG7) Barriers to performing exams and communicating with patients; Lack of confidence ‘‘Because it is so vague it’s hard to stand up and say, we’re going to do something about it.’’ (FG6) ‘‘In my opinion no one is able to diagnose any kind of oral cancer clinically.’’ (FG7) ‘‘From a legal point of view, you don’t want somebody suing you because well, he told me I had oral cancer and it was a denture sore.’’ (FG7) Barriers to performing exams and communicating with patients; Patients’ low receptivity & financial concerns ‘‘You could volunteer to do the exam for free, and they still wouldn’t come.’’ (FG7) ‘‘Some of them don’t want you to do it if they think you’re going to charge for it. But if you say it’s part of it, then they don’t care.’’ (FG7)

FG1: Focus group with 8 African American males ages 51–75. FG2: Focus group with 12 African American males ages 35–50. FG3: Focus group with 12 African American males ages 35–50. FG4: Focus group with 12 African Americans females ages 51–75. FG5: Focus group with 12 African Americans females ages 35–50. FG6: Focus group with 9 dentists. FG7: Focus group with 8 dentists.

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Female respondents expressed greater feelings of susceptibility than did males. In general, women expressed uncertainty about their risk for oral cancer; most often this uncertainty corresponded with an expressed lack of knowledge of oral cancer risk factors. In the male focus group among respondents ages 51–75 years (FG1), the issue of mistrust of the medical system and physicians in general emerged. One respondent stated, ‘‘If I had oral cancer I would really be devastated because it’s, you know I talk a lot, plus I don’t trust, I know enough about doctors to know you can’t really trust what they say.’’ The majority of men in the group echoed this sentiment. One focus group with younger, male respondents showed healthcare providers’ apathy toward patient education responsible for lack of knowledge: ‘‘They don’t care about us or they’re just not concerned that we may be in a high risk category where we may be susceptible to this type of disease.’’ However, these issues were not expressed in the female groups. 3.2. Dentists’ estimate of public awareness of oral cancer The dentist groups estimated a minimal level of public awareness of oral cancer. Most participants compared oral cancer with breast cancer and lung cancer: ‘‘I don’t think oral cancers are in the forefront of their consciousness.’’ Most dentists said that socioeconomic levels would affect the public knowledge level. However, their discussion on demographic differences was brief. Most of the discussion focused on their perception of the public’s disinterest in receiving health information, specifically oral cancer information. In particular, dentists in one of the two groups attributed the lack of public knowledge of oral cancer to several reasons: (1) the public’s low perceived susceptibility, (2) the public’s lack of concern, and (3) the association of oral cancer with physicians’ medical authority. The group reasoned that because there are no highly visible oral cancer victims with whom people can identify, they do not feel vulnerable to, or fearful of oral cancer. The dentist participants perceived that smokers, who are the most vulnerable to oral cancer, are either in denial or maintain perceptions of invincibility and thus are the most difficult to educate. One dentist voiced his frustration to a common patient response while trying to point out a potentially problematic lesion, ‘‘They say it has been there three years; it doesn’t bother me.’’ This particular group of dental practitioners held patients responsible for their lack of knowledge concerning oral cancer. A couple of dentists reported that people associated oral cancer with general medical practitioners and not dentists. One dentist stated that his patients were surprised to learn that oral cancer was something that should be identified by a dentist. 3.3. African Americans’ experiences with oral cancer exams Initially, a majority of African American respondents stated no one had ever suggested they have an oral cancer exam. Some respondents stated they thought their dentists or dental

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hygienist performed the exam, but were unsure if they had received an oral cancer exam. As one woman said, ‘‘I’m not sure, I’ve had dental work done, you know they never tell me.’’ One man stated, ‘‘This is my first time hearing about it’’, and others echoed the statement. This theme was present in all focus groups. When asked if they had any idea what an oral cancer screening would be like, respondents conjectured that methods that may be used included mouth cultures, biopsy, X-ray, scoping the throat, throat culture, blood test, pulling out fluids, needle biopsy, MRI, DNA testing, radiographs, or swabbing the area. Ultimately, the resounding response to this line of inquiry was ‘‘I don’t know.’’ The focus group moderator passed out a brochure describing the oral cancer screening exam created by the National Institute of Dental and Craniofacial Research [20] and read the brochure aloud. Interestingly, once the screening process had been described several of the male respondents expressed sentiments such as: ‘‘I’m just finding out that I’ve been having an oral cancer exam every 3 months, but I didn’t know it was an oral cancer exam.’’ This response was echoed by one female participant who said, ‘‘I’ve had dental work, but they never told me.’’ Another group member, obviously bewildered, asked, ‘‘So why wouldn’t they tell you I wonder?’’ 3.4. African Americans’ needs for screening information and communication with dentists When respondents were asked how important it is to know exactly what will occur in an oral cancer exam, levels of trust and comfort with the healthcare provider were cited as important factors. Overall, respondents were divided on their response to this question. Among those who trusted their provider, less information was necessary; however, most said any messages should fully describe the oral cancer exam process. As one male participant stated, ‘‘We have to understand. Anytime you have an exam you want to know what somebody is going to do.’’ This sentiment was echoed by another male participant who said, ‘‘I don’t need to know stepby-step, as long as I know why.’’ One focus group with male respondents ages 35 and 50 emphasized that healthcare providers need to prioritize high risk patients who smoke or drink, and educate them on the prevalence rate of oral cancer among the African American population and the importance of early detection of oral cancer. As before, issues of distrust did not emerge among females. Female respondents expressed a good deal of faith in their physicians, but did not mention dentists specifically. Some also suggested that since many people are afraid of the dentist, primary care physicians should offer oral cancer exams as well. 3.5. Dentist–patient communication concerning oral cancer exams Most of the dentists across the two focus groups claimed that they explain to new patients when they are performing an oral cancer exam. The majority, however, said they do not use the term oral cancer. Instead, they try to describe what they are

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checking, such as ‘‘I am looking at the back of your mouth’’ and ‘‘I’m looking for anything that looks unhealthy’’ or ‘‘I want to make sure that there’s not something that has gone undiagnosed.’’ These responses suggest a minimal explanation that most likely falls short of providing a satisfactory explanation of what they are doing and why they are doing it. Typically, the majority of the dentists explain less and less to patients over time so long-standing patients may have the least communication with their dentists. Most dentists assumed that their patients would recognize oral cancer exams without a verbal explanation: ‘‘I just automatically do it because they know what I’m doing now’’ and ‘‘at recall I don’t always tell them, but I think they realize that they’ve been through it.’’ However, a couple of dentists noted that their patients often demand clarification they received an exam during a regular check-up: ‘‘If I walk out of the room and not do [explain] it, they’re like, I didn’t get my full exam.’’ There are other indications that little communication is being exchanged concerning oral cancer. The dental focus group that cited the public’s low susceptibility and lack of concern as responsible for their limited knowledge cited patients’ low receptivity as a main reason for the lack of dentist–patient communication. The dentists explained that the reasons patients demonstrated low receptivity varied by age. They suggested that while younger patients – especially teens and young adults – would not pay attention to oral cancer messages because they feel invulnerable, older people would not listen to dentists because they do not care. Communication on oral cancer occurs only when patients who became aware of oral cancer initiated through communication with their dentists: ‘‘Usually only if they’re aware of a problem’’ and ‘‘if they’ve had another family member that’s experienced some form of cancer.’’ However, most dentists reported no need of communication or education on oral cancer: ‘‘most of them don’t come out and say, I need a cancer screening.’’ Concerning high-risk patients, they argued that communication about risk factors of oral cancer would make smokers and drinkers feel uncomfortable. The dentists illustrated personal anecdotal encounters with smokers: ‘‘They don’t want you to point your finger at them necessarily’’, and ‘‘[the patient] is not coming to us anymore because we are preaching too much about this.’’ The majority of the participants agreed they were uneasy about communicating with smokers concerning smoking and its association with oral cancer. ‘‘I don’t know if it’s my position to tell them to stop smoking.’’ However, one participant disagreed and made this comment: ‘‘Us not telling them to quit smoking would be like going to a cardiologist and you’re a little overweight, he tells you, well I’m not going to tell you to lose the weight, but I think you should.’’ 3.6. Barriers to dentists performing oral cancer exams The dentists cited several barriers to performing oral cancer exams such as time, potential lost revenue, norm of performing

oral cancer exams, lack of confidence in cancer diagnosis, and lack of training. The issue of time is obviously associated with profit. In comparison to other profitable services such as veneers, bleaching and implants, oral cancer exams do contribute less financial gain because returns on time invested in oral cancer exams are minimal: ‘‘My hygiene department probably couldn’t pay for a front desk person and do all that other work’’ and ‘‘I lose money on examinations so I don’t go into details.’’ Concerns for longer check-up time and less profit were cited as reasons to give oral cancer screening selectively and efficiently. Perceptions of low confidence in diagnosing oral cancers made the dentists hesitate to perform the screening and inform their patients of the result. The dentists almost unanimously used the terms ‘‘subtle’’ and ‘‘vague’’ to describe lesions: ‘‘[some of the cancer tissues] are so vague that it is just a slight color in tissue for the most part.’’ Other comments relating to the difficulty in diagnosing vague lesions with certainty included the following: ‘‘I can’t really sit down and write down in his chart that there’s no oral cancer in his mouth’’, and ‘‘I can’t really say that you don’t have the cancer.’’ Dentists were reluctant, based on only a visual exam, to tell patients they are free of oral cancer. Patients’ low receptivity and their financial concerns were provided as barriers as well. The dentists observed that low income patients were often unwilling to have the exams out of concern about medical bills. When asked how these barriers may be alleviated, dentists mentioned increasing insurance coverage, arranging regular continuing education training sessions for dentists with a focus on oral pathology, and expanding public education of oral cancer with an emphasis on explaining the negative and often severe consequences. In one group, dentists argued that they should make the exams a professional norm: ‘‘it’s not taken seriously by the whole dental organization’’ so ‘‘they should have like a code.’’ 3.7. Barriers to African Americans getting oral cancer exams African American focus groups cited several barriers to receiving the exams. These included lack of awareness of oral cancer and the screening process, the belief that oral cancer is rare, fear of pain, fear of dentists and the cost of the oral cancer exam. Male and female respondents in the 35–50 year age groups cited issues associated with access to dental exams such as a need for convenient locations, extended hours in health clinics, Saturday hours, mobile clinics, and a desire for low-to no-cost exams. In an attempt to determine if monetary cost of treatment would be a barrier to care if oral cancer was diagnosed, respondents were asked if they knew where they would receive treatment for oral cancer, and how the cost of treatment would be addressed. There was no discussion among the groups as to what treatment might involve, but all agreed their immediate concern would be to gain treatment. Many had health insurance, and others stated their belief that a national health

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insurance program is needed so people will not have to worry about getting treatment for any form of cancer. All agreed cost would not deter them from seeking treatment. In addition, the issue of distrust of healthcare providers expressed among the African American male participants prevented them from interacting with healthcare providers; ‘‘A lot of times there’s a disparity and the services are just not available.’’ The distrustful relationship with healthcare providers along with lack of awareness of oral cancer prevents African Americans from requesting an oral cancer exam. While dentists mentioned patients’ low receptivity as one of the obstacles to performing the exam, lack of awareness was a frequent barrier cited by African Americans. Clearly, the identified barriers to oral cancer screening are different for patients and dentists. 4. Discussion and conclusions 4.1. Discussion African American participants showed little knowledge about oral cancer including its risk factors and consequences, and their higher vulnerability to oral cancer. Overall male respondents showed more knowledge of risk factors for oral cancer than female respondents and yet did not display higher vulnerability to oral cancer than female respondents. However, almost all the respondents were not able to discuss signs and symptoms of oral cancer and detection of oral cancer. Upon learning risk factors of oral cancer and its prevalence rate among African Americans, the respondents demanded information on statistical evidence of their vulnerability to oral cancer and the importance of oral cancer detection for high-risk patients. While dentists perceived the public had little knowledge regarding oral cancer, they also assumed that the public would not be interested in receiving information about oral cancer. Regarding the absence of cancer information exchange, dentists tend to hold their patients responsible. For example, one of the two dentist focus groups attributed the lack of communication with patients to their patients’ indifference to oral cancer information. However, the majority of African American participants cited lack of knowledge about oral cancer as a bigger barrier than disinterest, fear of dentists or cost. African American focus group participants’ requests for more information, despite their distrust of healthcare providers, reveals a chasm between dentists’ estimates of patient information needs and the patients’ actual information needs. Thus, dentists’ underestimation of their patients’ information needs impeded dentist–patient interaction on oral cancer. The gap between the two groups indicates that challenging opportunities exist for dentists to initiate communication with patients on oral cancer. Dentist–patient communication on oral cancer is rare and dentists do not consistently use the term ‘‘oral cancer’’ despite having performed the screening. A considerable number of the participants in the focus groups of African American adults believed they had received the exams on a regular basis, but

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none reported that their dentists had explained what they were doing. This prompted participants to ask for clear information on the purpose and general process of oral cancer exams. In particular, male participants showed stronger distrust of healthcare providers, including dentists, and demanded an explanation of oral cancer exams. While all the focus groups with African American adults revealed an absence of dentist–patient communication on oral cancer exams, the majority of dentist focus group participants claimed they performed the exams on new patients and explained what they were doing during a patient’s first visit. However, there seemed to be very inconsistent opinions about how much information should be disclosed, and no consensus on how the screening explanation should be phrased. Some dentists refrain from using the term oral cancer out of concern of inaccurate diagnosis. The dentists’ tendency not to use the term oral cancer during screening explains the gap between dentists and African Americans in this study, and in the general population in reporting oral cancer screening [11,25,27]. Even dentists who admitted using inconsistent terms to describe their screening process perceived that they performed the screening and properly interacted with patients, which is far from the African American participants’ impression shaped by the interaction with dentists. Educating dentists to be better information providers would be helpful in setting consistent usage of oral-cancer-related terms and the amount of oral cancer information given to patients. Dentists cited uncertainty over who is responsible for oral cancer diagnosis and discomfort with talking to high-risk patients as obstacles. Almost all the dentists admitted little confidence in diagnosing oral cancer. Their uncertainty over their own diagnostic skills might lead them to avoid using the term oral cancer in communication with patients. Additionally, dentists miss opportunities to inform their patients of the importance of detecting oral cancer early and preventive measures. The dentist focus groups suggested that convenient training programs and implementation of oral cancer exams as a norm at the professional level can help change their approach to oral cancer exams. None of the dentists perceived the significant role dentist–patient communication plays in improving the public’s oral health status and reducing oral health disparities. They asserted no claim over oral cancer patient education and also thought the education agenda for this disease would be set by undefined health organizations. In the recruitment phase of this study we tried to match the targeted African American population with their dentists by recruiting dentists in specific geographic areas. However, none of the dentists offered comments specific to African Americans. Even though we could not make a corresponding comparison between dentists and African Americans on each question, their reactions remained relevant to our purposes. The major themes parallel those from previous research [11,17,18,27]. The findings suggest that both African American adults and dentists should be educated on the gravity of oral cancer, and the effectiveness and convenience of oral cancer exams.

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4.2. Conclusions

References

In sum, dentists and African American adults in an area with a high incidence of oral cancer and a high prevalence of latestage diagnosis have disparate views on communication oral cancer and its detection. While African American participants showed a need for information on risk factors and asked for a clearer explanation of oral cancer exams, the majority of the dentists did not perceive themselves as being information providers, but rather dental service providers. Many African American participants were stunned to find that they were not given transparent explanations for the screening service they received. It is possible that this realization exacerbated their distrust in health care providers. Simply put, service delivery without proper information exchange can stimulate distancing of African Americans from health care providers. Dentists’ lack of confidence in performing the screening and initiating communication with patients implies that dentists should be educated on screening processes and communication skills with at-risk populations. Most dentists admitted to being challenged in their ability to talk with at-risk patients about their risky behaviors. This admission signals a need to educate dental care providers on effective communication skills to cultivate trust among their patients as well as motivate them into collaborative communication.

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4.3. Practice Implications The role of dentists is vital in educating patients about preventive dental care and reducing oral cancer disparities. This study revealed a few challenges for dentists to overcome. African American adults, particularly African American men, reveal distrust of the medical establishment. Yet, they demand information on oral cancer detection. These findings imply there are many opportunities for dentists to help alleviate racial disparities by increasing awareness of oral cancer among vulnerable populations, correcting misperceptions about oral cancer risk factors, using consistent and clear terms related to oral cancer and its exams, and encouraging at-risk populations to receive annual oral cancer exams. As much as the participants in the dentist focus groups proposed that the dental community codify oral cancer exams, we recommend that dental communities develop clear and specific guidelines on communication with patients, as well as offer continuing education on oral cancer screening procedures. Establishing the regular provision of oral cancer exams as a professional norm would underscore dentists’ concern for patients and providing continuing education on screening and dentist–patient communication could increase the provision of such exams. Acknowledgements We confirm that all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story. This study was supported by grant R01DE16226 from the National Institutes of Health.

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