Factors Influencing Men's Decisions Regarding Prostate Cancer ...

J Community Health (2011) 36:839–844 DOI 10.1007/s10900-011-9383-5

ORIGINAL PAPER

Factors Influencing Men’s Decisions Regarding Prostate Cancer Screening: A Qualitative Study Jeanne M. Ferrante • Eric K. Shaw John G. Scott

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Published online: 20 February 2011 Springer Science+Business Media, LLC 2011

Abstract Shared decision making is recommended before prostate cancer screening. Little is known regarding reasons why men choose to get or not get prostate cancer screening, particularly in white or Hispanic men. We conducted semi-structured in-depth interviews of 64 men, age 50 years and over, purposively sampled from men who were never screened for prostate cancer or who screened abnormal in northern New Jersey. Qualitative analysis was iterative using a grounded theory approach involving a series of immersion/crystallization cycles. Men who had abnormal PSA tests either actively sought out screening because of family history of prostate cancer or received their screening as part of a routine physical examination. Men who were never screened avoided testing primarily because they perceived they were at low risk due to lack of urinary symptoms, lack of family history of prostate cancer, or beliefs that healthy behaviors can prevent prostate cancer. Other reasons for not getting screened included: fear of cancer, embarrassment over digital rectal exam, confusion over the screening procedure, and skepticism over the benefits of screening. Some men were willing to get screened if structural barriers were removed, their

J. M. Ferrante (&) E. K. Shaw Department of Family Medicine and Community Health, UMDNJ-Robert Wood Johnson Medical School, 1 World’s Fair Drive, Suite 1500, Somerset, NJ 08873, USA e-mail: [email protected] J. M. Ferrante The Cancer Institute of New Jersey, New Brunswick, NJ, USA J. G. Scott Northeastern Vermont Regional Hospital, St. Johnsbury, VT, USA

doctor recommended it, or if they were prompted by urinary symptoms. None had discussions with physicians about potential risks of prostate cancer screening. Men received their health information through lay media, friends or family members. Educating men in the community through mass media about benefits and limitations of prostate cancer screening may be more effective to promote and facilitate shared decision making with their physicians. Keywords Cancer screening Prostate-specific antigen Decision making

Introduction Prostate cancer is the most common cancer and the second most common cause of cancer death among men in the United States [1]. It is estimated that almost 218,000 American men will be diagnosed with prostate cancer in 2010, with over 32,000 deaths. Approximately 92% of prostate cancers are diagnosed at early or regional stage, with 5-year relative survival rates about 100% [1]. Due to the uncertain benefits of prostate specific antigen (PSA) screening and the high risks of overdiagnosis and overtreatment of prostate cancer [2–4], current guidelines recommend men be informed of the potential risks and benefits before undergoing PSA screening [5, 6]. While discussions with physicians regarding PSA testing are highly predictive of prostate cancer screening, [7–12] studies suggest that in some cases, discussions with physicians do not occur or contain little information about risks of PSA screening [9, 13]. In addition, many men are already committed to prostate cancer screening prior to having discussions with their physicians [14]..

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Prior survey studies have identified the following factors associated with PSA screening: higher perceived susceptibility [15–18], perceived benefits of screening [9, 14, 18– 21], prostate cancer knowledge [8, 22–24], and worry or concern about prostate cancer [18, 25–27]. Studies examining reasons why men do not undergo prostate cancer screening have mainly focused on barriers to screening in African-American men [17, 28–38]. These studies reveal the following barriers: obstacles to access [28–30, 34, 36– 39], lack of knowledge, [29, 30, 36] fear of cancer, [29, 30, 38] embarrassment [30, 37], threat to manhood [36, 39], and distrust of the medical system [30, 36, 38]. Little is known regarding reasons why non-black men do not get prostate cancer screening. The purpose of our study is to qualitatively explore factors associated with men’s decisions regarding prostate cancer screening, particularly in unscreened White and Hispanic men. We sought to understand whether men are making conscious decisions whether or not to get PSA testing based on scientific evidence.

Methods Study Sample This was a qualitative study using data from semi-structured in-depth interviews of men, conducted between March 2009 and May 2010. Men were recruited from flyers posted in community-based organizations and via newspaper ads in northern New Jersey. Our purposive sample included men age 50 and older who were never screened for prostate cancer or who had an abnormal screening. Men who did not speak or understand English or Spanish were excluded. In 4 cases, men’s wives also participated in the interview. The study protocol was approved by the Institutional Review Boards of University of Medicine and Dentistry of New Jersey, Cancer Institute of New Jersey, and US Army Medical Research and Materiel Command. All participants provided informed consent and received $30 cash after interview completion. Data Collection In-depth interviews were conducted in-person in English or Spanish by four trained qualitative interviewers in the men’s homes, offices of the community-based organizations, or at a convenient location agreed upon by the interviewer and participant. The research team developed an interview guide using Andersen’s Behavior Model of Health Services Use [40] as the conceptual framework. Participants were asked to describe their knowledge about prostate cancer and screening for prostate cancer, feelings

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toward prostate cancer screening, sources of information and any discussions with doctors regarding prostate cancer screening, feelings toward health and healthcare in general, experiences with other family members or friends with cancer, and personal health practices and use of health services. Barriers and facilitators to their decisions regarding prostate cancer screening were also elicited. Men who screened abnormal were asked to think back to the time prior to their abnormal test. Interviews lasted 30–90 min and were digitally recorded and transcribed verbatim. Recruitment and interviews of men continued until data reached saturation (N = 64). Interview audiofiles, transcripts, and interviewer fieldnotes served as data sources for our analysis. Transcripts were de-identified and imported into ATLAS.ti (Atlas.ti Scientific Software Development GmbH,Berlin, Germany) for coding and analysis. Data Analysis Our qualitative analysis used a grounded theory approach that involved a series of immersion/crystallization cycles [41]. This approach involves immersing ourselves in the data through cycles of readings and reflections, gaining insights and themes as they emerge, until reportable interpretations became apparent and crystallize. Initially, the research team (JF, JS, ES) read transcripts jointly to understand the content and to develop a set of preliminary emergent codes. Group analysis continued until consensus was reached regarding coding schemes. We then independently analyzed the remaining data, meeting regularly to discuss interpretations and to refine coding schemes as needed. All transcripts were independently coded by at least two research team members, and any differences in coding were resolved through group consensus. Next, data within codes were re-read and analyzed in a second immersion/crystallization cycle, and emerging themes and interpretations were compared and contrasted within and between groups (never screened versus abnormal screen). A third immersion/crystallization cycle was used to identify negative or disconfirming evidence for our emerging themes. Through this process, themes and interpretations were refined. The quotations included in this paper represent and illustrate our key findings.

Results Table 1 describes our study population (N = 64). The majority of men were between 50–69 years of age, white, married, highly educated, and employed. The following sections describe factors influencing whether or not men received prostate cancer screening.


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Table 1 Characteristics of participants Total N

All men N (%) 64 (100)

Never screened N (%) 24 (37.5)

Abnormal screen, no cancer N (%) 18 (28.1)

Abnormal screen, cancer N (%) 22 (34.4)

50–59

22 (34.4)

15 (62.5)

5 (27.8)

2 (9.1)

60–69 70–79

30 (46.9) 6 (9.4)

9 (37.5) 0

10 (55.6) 2 (11.1)

11 (50.0) 4 (18.2)

1 (5.6)

5 (22.7)

17 (94.4)

18 (81.8)

Age

C80

6 (9.4)

0

Race/ethnicity White

50 (78.1)

15 (62.5)

Black

4 (6.2)

1 (4.2)

Hispanic

9 (14.1)

7 (29.2)

Asian

1 (1.6)

1 (4.2)

Married

47 (73.4)

14 (58.3)

14 (77.8)

19 (86.4)

Unmarried

17 (26.5)

10 (41.7)

4 (22.2)

3 (13.6)

High school

15 (23.4)

10 (41.7)

College

37 (57.8)

8 (33.3)

0 1 (5.6) 0

3 (13.6) 1 (4.5) 0

Marital status

Education

Postgraduate

0 17 (94.4)

7 (10.9)

3 (12.5)

Unknown Employment

5 (7.8)

3 (12.5)

1 (5.6)

Employed

36 (56.2)

18 (75.0)

9 (50.0)

9 (40.9)

Retired

24 (37.5)

3 (12.5)

8 (44.4)

13 (59.1)

Unemployed

3 (4.7)

2 (8.4)

1 (5.6)

Unknown

1 (1.6)

1 (4.2)

Men with Abnormal Tests Men who had abnormal PSA tests either actively sought out screening or received their screening as part of a routine physical examination. Men actively sought out screening because of fear of cancer due to a family history of prostate cancer or at the recommendation of their wives or other family members. For example, Since I have a family history I’ve been getting my PSA checked regularly, and I was going to different health department screenings. I went to a screening and my PSA was a little bit elevated and had been, so I decided to go to a regular urologist to get it checked, just because of the family history (age 51, white). Other men had PSA testing ordered by their doctor as part of bloodwork during routine physical examinations (‘‘I always had one with my company physical. Every 3 or 4 years or whatever, we got a pretty complete physical and PSA was always part of it’’-age 69, white) or with bloodwork for other reasons. For example, one man had PSA test ordered as part of preoperative bloodwork prior to knee surgery, and another man reported that he discovered he

0

5 (22.7) 9 (40.9)

0

4 (18.2) 1 (4.5)

0 0

had an abnormal PSA test after donating blood: (‘‘When I used to donate blood, they would tell me, ‘You might want to look into that because your PSA score was a little bit high-’’’ age 65, white). Most men lacked much knowledge of or thought about prostate cancer screening until after their abnormal test. None of the men had discussions with their doctors about potential risks prior to screening. A more extensive analysis of men with abnormal screens will be provided in a separate paper.

Men Who Were Never Screened We identified two types of men who were never screened and categorized them as ‘‘active refusers’’ or ‘‘passive avoiders.’’ The active refusers made conscious decisions to not get screened, while the passive avoiders were willing to get screened and only needed a little prompt. Active Refusers Active refusers actively avoided getting prostate cancer screening for the following reasons:

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Perception that Risk of Prostate Cancer is Low These men had no urinary symptoms and no family history or other social contacts with prostate cancer, and they strongly believed that their healthy behaviors would prevent cancer. I just feel real healthy. I work out a lot, take a lot of supplements, and I just don’t feel the risk of that. And I also read years ago that if you’re very sexual, it limits the amount of back-up in your prostate area, so everything’s been working for me well. If there’s no history of it in your family, and my brother got checked out and he’s fine, and there’s no signs, and I eat right, and I don’t see a close friend or relative get it, I’m just going to put it off (age 52, white). Skepticism about Benefits of Screening A few men had some understanding of the scientific evidence about the risks and benefits of prostate cancer screening. For example, Medical experts are even saying the PSA may not tell you that you don’t have cancer or show that you have it…Most people that have prostate cancer don’t die from prostate cancer; they die from other causes. What’s the point of getting a test if it might not be reliable? (age 56, white) Ill with Other Comorbid Conditions These men either presently or in the past had other serious illnesses, including other cancers, which made prostate cancer screening a low priority. For example,


Some confused screening with biopsy procedures, while others confused it with other cancer screening or therapeutic procedures. For example, I just can’t seem to do it…[I heard] that I can’t drive for 24 h after …and they kind of sedate you so you don’t even know nothing. You wake up, you have to get driven home, and you sleep when you get home. And before the test…you have to drink something and clean your system and all that mess (age 52, white). Many people do not go through with it because it is painful–that they put a tube through the penis–they introduce something through there–that is why it is very painful. That is the reason why I am afraid of having the test (age 50, Hispanic). Passive Avoiders The passive avoiders were willing to get screened if their doctor recommended it or if they could overcome structural barriers as depicted in these two men: I asked my GP about it, and he says, ‘Look, you don’t have a history in your family. You should have it, but I’m not going to pressure you to do it.’ So at that point, I said, ‘Okay,’ but I also gave him the provision that if you ever think or see something that justifies it, please let me know and I’ll get it done. (age 57, white)

After four heart attacks, a couple of angioplasties, a couple of stents, and a four-way bypass, I’ve had so many things go wrong with me, I don’t want to find out if there’s anything else wrong. I really don’t want to know (age 50, white).

I don’t have a health care provider, I don’t have an insurance card for the doctor, and I don’t even know where to go… That is something that I have not paid much attention to… At this moment if I wanted to get a prostate exam, I don’t know where to go (age 52, Hispanic).

Embarrassment or Discomfort with Digital Rectal Exams Some men were repulsed by the idea of getting a digital rectal exam. For example,

Several men were prompted to get screening because they developed urinary symptoms or because they saw our recruitment flyers. These men came to participate in the study thinking they would receive a screening examination.

Because of what the doctors have to do…they say that they put their fingers into that—all that is very ugly. I always have this fear, no, maybe it’s not fear, it’s kind of anguish…kind of ugly to feel this (age 65, Hispanic). Not Wanting to Know Fear of cancer dissuaded some men from getting screened. This is depicted by: I really don’t want to know. Like I said, if it’s my time, it’s my time (age 50, white). Confusion Over the Screening Procedure Several men did not know what prostate cancer screening entailed.

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I read it in a newspaper. I’m interested because I’m getting old. And I gotta go to the bathroom so much now at night. I go to the bathroom four, five, six times. And something’s wrong. So I should get my prostate checked (age 56, white). Comparison of Men Who Were Never Screened and Men Who Screened Abnormal There were several differences between the men who were never screened and those who screened abnormal. Men who screened abnormal perceived their risk of cancer to be high, mainly because of a positive family history. In fact,


men who had abnormal PSA tests but normal biopsies were not reassured by the benign biopsies and continued to have frequent screenings. Conversely, men who were never screened perceived their risk of prostate cancer to be low. Their belief in their healthy behaviors inhibited them from getting screened, while the men who screened abnormal believed cancer screening was part of their healthy behaviors. Fear of cancer motivated these men to get regular screenings, while fear of cancer inhibited PSA testing in men who were never screened. Most men in both groups had low knowledge of prostate cancer screening and received their information through lay media, friends or family members. None had discussions with doctors regarding potential risks of PSA screening.

Discussion Although our study is limited by interviews of mostly white educated men, we found similar reasons for not getting screened previously identified in African-American men: obstacles to access [28–30, 34, 36–39], lack of knowledge, [29, 30, 36] fear of cancer, [29, 30, 38] embarrassment [30, 37], and threat to manhood [36, 39]. Unlike prior studies, many of the men in our study made active decisions to not get screened, mainly because of low perceived risk. Distrust of the medical system, identified as a barrier to screening in African-American men [30, 36, 38], was not evident in our sample. A few men had some understanding of the scientific evidence about the risks and benefits of prostate cancer screening, but this knowledge came from media sources and not through discussions with physicians. In fact, information about prostate cancer and prostate cancer screening was usually received through lay media, friends or family members. Although current guidelines recommend men be informed of the potential risks and benefits before undergoing PSA screening [5, 6], our data suggest this is not happening. Even in the men who did get screened, none of them were informed about potential risks of PSA screening. Many men actively made the decision to get screened prior to seeing their doctors [14], while some men didn’t know they were getting PSA screening until after their abnormal test. This confirms other reports suggesting some men get PSA screening without any discussion [9, 13]. We found many misconceptions about prostate cancer prevention and screening tests in our sample of mostly white, educated men. Many of our ‘‘active refusers’’ made the decision to not get screened for inaccurate reasons—they mistakenly perceived their risk to be low due to their healthy behaviors, while other men did not understand what screening entailed. Understanding the pros and cons of PSA testing for each individual is complex, making this an ideal

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issue in which health decision aids may have great potential. In randomized trials testing the effectiveness of decision aids on PSA screening, use of decision aids improved knowledge about PSA testing while significantly decreasing the proportion of men having PSA testing [42]. Implementing use of decision aids in primary care practice is challenging, and it may sometimes be too late for men who rely on lay media and anecdotes from friends or family members for their health information. Educating men and family members in the community via mass media about potential risks versus benefits of prostate cancer screening may be more effective and facilitate informed discussions with their doctors. There are many prostate cancer awareness campaigns and community service projects that advocate prostate cancer screening [43]. It is now time for them to also present information about potential risks of prostate cancer overdiagnosis and unnecessary treatment. Acknowledgment This research was supported through a grant from the Department of Defense as part of the Dean and Betty Gallo Prostate Cancer Center (W81XWH-06-1-0514). We thank the Morris Regional Health Partnership and American Cancer Society for their assistance with the study.

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