Examining risk perception among men with a family history of prostate cancer

Examining risk perception among men with a family history of prostate cancer

Patient Education and Counseling 85 (2011) 251–257 Contents lists available at ScienceDirect Patient Education and Counseling journal homepage: www...

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Patient Education and Counseling 85 (2011) 251–257

Contents lists available at ScienceDirect

Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou

Patient Perception, Preference and Participation

Examining risk perception among men with a family history of prostate cancer Andrew G. Matthew a,b,c,d,*, Christina Paradiso e, Kristen L. Currie a, Antonio Finelli a,c, Mary-Ellen Hartman a, Lianne Trachtenberg a, Cheryl Shuman f,g, Sheri Horsburgh h, David Chitayat f,i, John Trachtenberg a,c, Paul Ritvo j,k,l,m a

Department of Surgical Oncology, Division of Urology, Princess Margaret Hospital/University Health Network, Toronto, Canada Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital/University Health Network, Toronto, Canada Department of Surgery, University of Toronto, Toronto, Canada d Department of Psychiatry, University of Toronto, Toronto, Canada e Department of Pediatrics, McMaster Children’s Hospital, Hamilton, Canada f Division of Clinical and Metabolic Genetics, Hospital for Sick Children, Toronto, Canada g Department of Molecular Genetics, University of Toronto, Toronto, Canada h Fred A. Litwin and Family Centre for Clinical Genetics and Genomic Medicine, University Health Network/Mount Sinai Hospital, Toronto, Canada i Department of Obstetrics and Gynecology, Mount Sinai Hospital, Toronto, Canada j School of Kinesiology and Health Science, York University, Toronto, Canada k Department of Psychology, York University, Toronto, Canada l Population Studies and Surveillance, Cancer Care Ontario, Toronto, Canada m Ontario Cancer Institute/Princess Margaret Hospital/University Health Network, Toronto, Canada b c



Article history: Received 14 May 2010 Received in revised form 29 October 2010 Accepted 20 November 2010

Objective: This paper explores factors that influence the formulation of risk perception among men with a family history of prostate cancer who are currently attending a prostate cancer screening clinic. Methods: Semi-structured interviews were conducted with fifteen participants. Interview transcripts were analyzed using interpretative phenomenological analysis. Results: The following themes were identified: Risk Information Pathways, Experience with Other Prostate Disease, Exposure to Prostate Cancer Screening, Exposure to Affected Relatives, Lifestyle Factors, Illness Beliefs, and Health-Based Risk Comparisons. Conclusion: Understanding the contributors to risk perception and applying this knowledge during screening visits and genetic counselling may help to reduce risk distortion and result in increased adherence to screening programs and reduced psychological distress. Practice implications: Prostate cancer screening should incorporate counselling to address patientspecific risk concepts in order to increase the accuracy and maintain the stability of risk perceptions. ß 2010 Elsevier Ireland Ltd. All rights reserved.

Keywords: Risk perception Risk factors Genetic risk Prostate cancer Qualitative methodology

1. Introduction Research has shown the majority of men with a family history of prostate cancer (PCa) understand that family history increases risk [1] but little is known about additional factors that influence risk perceptions in this population. The relevance of exploring these factors is underlined by two important associations: risk perception is associated with an individual’s intention to participate in screening [2] and with psychological distress [3,4]. Past investigations demonstrate that men with a family history of PCa may distort personal risk estimates. Miller et al. demon-

* Corresponding author at: 3-130, Princess Margaret Hospital, 610 University Avenue, Toronto, ON M5G 2M9, Canada. Tel.: +1 416 946 2332; fax: +1 416 946 2771. E-mail address: [email protected] (A.G. Matthew). 0738-3991/$ – see front matter ß 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2010.11.020

strated that individuals with a family history of PCa are more likely to overestimate risk when compared to men without a family history [5]. Bratt found that 40% of men with a family history of PCa were over-estimators. To the degree to which risk distortion reflects a fear of PCa, it may cause some men to avoid screening [3]. This association is bolstered by parallel research in women with family histories of breast cancer which has shown that overestimation of personal risk is common [6], and that over-estimators see less benefit in adhering to surveillance activities than women at population risk [7,8]. The possibility that risk distortion may influence screening intentions underscores the importance of examining factors that influence risk perception. Perceived susceptibility to PCa has been linked with diseasespecific worry in men with a family history of PCa [9]. Inflated risk has been associated with psychological distress [4] and depression and worry severe enough to affect daily life [3]. PCa risk perceptions can mitigate/exacerbate the relationship between


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family history of the disease and worry about PCa, suggesting that better risk management could be helpful in reducing worry about PCa [10]. In a comprehensive overview of the psychosocial issues experienced by men with a family history of PCa, Wakefield et al. comments on the importance of addressing the risk information needs of this population through counselling [11]. Research in chronic disease has demonstrated that inheritance is not the only contributing factor to risk perception; environmental and behavioral factors also play a role in an individual’s conceptualization of risk [12]. A study by Walter and Emery illustrated that individuals with a family history of cancer felt they could reduce cancer risk by altering their lifestyle [13]. Personal experiences of signs or symptoms of disease have also been shown to activate risk perception [14]. Risk perceptions are also associated with disease severity, whereby individuals feel at greater risk of developing a disease if they witness a poor outcome in an affected relative or friend [13,14]. Lipworth et al. found that the process of conceiving personal risk is subject to cognitive processes (e.g. personal beliefs) [14]; suggesting that risk perceptions may be modifiable by moderating patients’ emotional responses and reinforcing appropriate risk information. Overall, there is sparse scientific literature specifically exploring the determining factors that give rise to risk perceptions in men with a family history of PCa. The objective of this study is to explore factors that influence the formulation of risk perceptions among men with a family history of PCa who have initiated PCa screening. Understanding the contributors to risk perception, and applying this knowledge during screening visits and genetic counselling may help to reduce risk distortion and result in increased adherence to screening programs and reduced psychological distress. 2. Methods 2.1. Participants The Prostate Centre at Princess Margaret Hospital supports a PCa Prevention Clinic (PCPC) which provides PCa screening for unaffected men deemed to be high risk (e.g. having one affected first-degree relative). Referrals are made to the PCPC clinic through General Practitioners who have identified patients that have a familial risk of PCa. Patients attending PCPC appointments have access to a Uro-Oncologist, Genetic Counsellor, Psychologist, Nutritionist and Exercise Physiologist. Participants for the present study were approached between January 2006 and April 2008 while attending regular PCPC screening appointments. Eligibility requirements included no personal diagnosis of PCa, at least one first-degree relative diagnosed with PCa, current engagement in screening/testing for PCa and no previous genetic counselling (Genetic Counselling is a relatively new and limited service in the PCPC at this time, hence many patients have not met with the Genetic Counsellor). For qualitative research, sample selection is guided by theoretical considerations specific to the objective of the study and by the need to achieve saturation. Research examining qualitative approaches to focused research questions confirms that saturation is commonly achieved with sample sizes as small as 10–20 participants [15,16]. In this study, through consecutive sampling saturation was reached with 15 participants. This means that data collection and analysis continued until no new or relevant data seemed to emerge regarding a theme and relationships between themes were well established. Demographic characteristics of the participants are presented in Table 1. In total, 24 men were approached: 15 men consented and completed the semi-structured interview and 9 men declined. Of the men declining participation, 5 indicated they would not be available to complete the interview, 2 did not want to be

Table 1 Demographic characteristics of study participants. Participant age in years: mean (range) Duration of PCa screening, n (%) 5 years >5 years but <10 years 10 years

58 (39–85)

8 (53) 3 (20) 4 (27)

Marital status, n (%) Single Married

2 (13) 13 (87)

Educational level, n (%)a Less than secondary school Secondary University

1 (7) 4 (27) 10 (67)

Fathered at least one son, n (%) No Yes

5 (33) 10 (67)


Does not equal 100% due to rounding.

audiotaped and 2 men did not see sufficient personal benefit for participation. 2.2. Procedures The study was reviewed and approved by the University Health Network Research Ethics Board. Study participation involved one interview lasting 30–45 min. Semi-structured interviews were conducted by two interviewers (CP, KC) by telephone or face-toface, depending on participant preference. The initial interview was investigator-developed and consisted of 19 questions based on the pooled knowledge and clinical expertise of several members of the investigative team (AM, CP, CS, SH, DC, JT, PR). Questions were designed to explore the participants’ conceptualization of their risk of developing PCa and factors they take into account when considering their risk. Serial analysis of the initial seven transcripts led to modification of the interview for use on subsequent participants. The interviews were audio-tape recorded and transcribed verbatim for data analysis. 2.3. Data analysis This study employed interpretative phenomenological analysis (IPA), as described by Smith [17], Smith et al. [18] and Willig [19], to explore the participants’ thoughts and beliefs about factors influencing risk of developing PCa. IPA is used extensively in health psychology research [20,21]; specifically in examining diseasespecific risk perceptions [22]. The IPA approach allows for expansion of knowledge by providing insight into how individuals attempt to make meaning of their disease-specific risk [23]. Interview transcripts were used as the source of data. Analysis of the transcripts was performed by five of the study investigators (AM, KC, MEH, LT and CP) using Microsoft1 Office Word [24] table and bolding features to highlight and organize meaning units (Column 1 – Interview Transcript, Column 2 – Coding). The analysis consisted of breaking the text into meaning units consisting of individual words, sentences, or paragraphs, followed by clustering related meaning units into appropriate themes. Within and between each transcript, the investigators cross-referenced each theme to derive the minimal number of distinct themes necessary to capture the participant’s experience. When unanimous agreement on a theme was not reached, the investigators met to review the specific participant quotes used to develop the theme. Attention was paid to the context of the quote to make certain that the interpretation was strongly grounded in the interview data [25]. In each case, this process effectively led to consensus on

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themes. The analysis team convened at the end of the theme development stage of the analysis to forge associations between themes and to create superordinate themes. 3. Results


Risk Information Pathways: o o o

Media Sources Patient-Directed Research Physician Communication

Experience with Other Prostate Diseases


Exposure to Prostate Cancer Screening + -

Exposure to Affected Relative + -

Traumatic Treatment Experience and Outcome Successful Treatment Adaptation and Outcome

Lifestyle Factors + -

Screening Appointments and Procedures Overall Participation in a Screening Clinic

Unhealthy Lifestyle Factors Healthy Lifestyle Factors

Using IPA to analyze the participant interviews 7 superordinate themes combined with 11 sub-themes were found to contribute to participants’ risk perception. The superordinate themes including applicable sub-themes are presented in Fig. 1. 3.1. Risk information pathways Participants identified three information pathways through which they learned about PCa risk: media sources, patient-directed research, and physician communication. The impact of these informational sources was to elevate the participants’ risk perceptions. 3.1.1. Media sources Media (e.g. newspapers, radio, and television) were reported as a common source of information regarding PCa risk, triggering a ‘super-sensitivity’ to their familial risk, feelings of being ‘‘bombarded’’, and acute feelings of increased vulnerability: ‘‘The bombardment of information gets you overly sensitive to this issue. . . There is so much talk about it. . .so most men will participate in screening (and) keep it in mind that something might happen.’’ (Participant ID 001) 3.1.2. Patient-directed research Information seeking through independent research increased risk perceptions: ‘‘So my chances are probably pretty good that I’ll get PCa, according to what I’ve read. Dr. Google tells you that your chances are this or that. . .’’ (Participant ID 021) It appeared that participants who engaged in patient-directed research struggled with understanding the complexity of scientific papers and discriminating the trustworthiness of non-sciencebased information. . . .there’s nothing that really sort of brings it all together, like you can get the information, but you don’t know what is correct. . .a lot of these things that you’re reading on the Internet, you don’t really know who’s sponsoring studies, or what the information is, how factual it is. . . (Participant ID 022)

Illness Beliefs + -

Fate Personal Influence

DECREASING FACTORS • Health-Based Risk Comparisons

Fig. 1. The directional relationship of factors that influence risk perception. (+) Increases risk perception. ( ) Decreases risk perception.

As a result, their self-directed research often left them with significant degrees of uncertainty and confusion. Under these conditions, our participants tended to view their risk as being more elevated than justified by evidence: I understand out of 10 men probably 7 men will develop it at one point prior to age 60. Certainly about 90% have it, and they die of other causes, I know that much. My chances of developing it are probably pretty good, maybe 70% chance of at least getting it. (Participant ID 010) 3.1.3. Physician communication Risk information provided by a physician also increased risk perception. Participants believed that a physician’s confirmation of risk status automatically meant their risk must be significant, which resulted in increased anxiety and distress: . . .when I went for the appointment. . .the doctor really made it very clear that I was very high risk. I think the first thing that he said to me was that I have a horrible background. I don’t know maybe they find that if they don’t put a fright in people that they


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don’t act on things, but it got me quite concerned. (Participant ID 022) 3.2. Experience with other prostate disease Experience with previous prostate problems elevated PCa risk perceptions. Men with prostate difficulties tended to be highly sensitive to and concerned about urological changes: ‘‘It started with the urination problem and everything started from that. It just makes me worry about it. It makes me more aware of any small changes or anything happening to me in this area of my body.’’ (Participant ID 007) Participant experience of symptoms of other prostate diseases appeared to trigger thoughts related to their family history risk resulting in an overall elevation of PCa risk perceptions. 3.3. Exposure to PCa screening Screening practices exerted a bidirectional influence on an individual’s risk perception. Pending ultrasounds, biopsies, and screening appointments were found to briefly elevate risk perception, while overall participation in the screening program appeared to have a stabilizing effect on risk perception and bring about a reduction in emotional distress. 3.3.1. Screening appointments and procedures Participants described experiencing anticipatory anxiety prior to scans, tests, and screening appointments. They stated that their distress was confined to a specific period during which they noted an increased risk perception: It’s easy for me to be cavalier now, but when we had the ultrasound and the biopsy; it was like I was sure that something was wrong and you start really cooking it up in your head and so your perceptions . . .they’d all be nine and ten on a scale of doom and gloom. (Participant ID 021)

caregiver) an upsetting or traumatic dying and death experience: ‘‘Yeah, this was the problem it was about a year he spent with severe pain and it was very difficult . . .but I would not go through the agonized year that my father did.’’ (Participant ID 014) 3.5. Lifestyle factors Participants cited several lifestyle factors that they believed have some bearing on their risk of PCa. Examples of factors associated with increased risk perception included: urban living, alcohol and recreational drug use, smoking and stress; while factors such as healthy diet and regular exercise were considered protective. 3.5.1. Unhealthy lifestyle factors ‘‘Yeah, what’s another risk, what came to mind is urban living. The food we eat, the air, the pollution in the water and the air and you know, chemical factors that we digest. . .may have some predisposition.’’ (Participant ID 013) 3.5.2. Healthy lifestyle factors Participants stated that they believed that they could reduce their risk by making healthy behaviour changes such as quitting smoking, eating a healthy diet, and exercising: ‘‘I changed my diet about five years ago, exercising probably the last eight years on a regular basis. I made these changes for general health, but with that cancer in the background.’’ (Participant ID 023) Additionally, participants explained that being pro-active in their healthcare served to give them a sense of control over their risk, and consequently, if they engaged in making healthy behaviour changes they had a tendency to experience less riskbased emotional distress: ‘‘I can help myself, I can do something, so by going through these experiences I learned that diet is important and that I can change that so that definitely had me more proactive in terms of what I eat.’’ (Participant ID 013) 3.6. Illness beliefs

3.3.2. Overall participation in a screening clinic Conversely, when participants reflected on their overall participation in the PCa screening clinic, they reported feeling pro-active about managing their risk. Their involvement in the screening/ surveillance programs appeared to provide them with a greater sense of control over the effects of being at elevated risk. This control appeared to help participants establish risk acceptance coupled with decreased emotional distress: ‘‘I think my odds of developing it are probably better than most, but I think the fact that I’m coming here to get checked makes me feel a lot better.’’ (Participant ID 010) 3.4. Exposure to affected relatives Exposure to an affected family member’s treatment trajectory exerted a bi-directional influence on self-perceived risk that depended on the affected relative’s treatment experience and outcome. 3.4.1. Successful treatment adaptation and outcome Participants who witnessed an affected relative tolerate treatment well, have a successful outcome, and thrive post treatment reported less PCa perceived risk: ‘‘If he’d (the participant’s father) have died of PCa, I’m sure my answers would be very different.’’ (Participant ID 021) 3.4.2. Traumatic treatment experience and outcome Exposure to traumatic treatment experience and outcome tended to intensify a participant’s risk perception. This response was amplified if the participant witnessed (e.g. as a direct

A participant’s personal disposition also influenced risk perception. Decreased risk perceptions were associated with participants who felt they could personally influence their risk, whereas, increased risk perceptions were associated with participants that felt they had no control over their risk status. 3.6.1. Personal influence Some participants felt they could influence their risk of developing PCa. The belief that one could influence risk was invariably based in changes in health-related lifestyle behaviour change: Once you are aware of the fact that your father does indeed have it [PCa] and there is a genetic relationship, you become far more aware and you do your own research and you look for ways to alter your own lifestyle [to] swing the odds in your favour. (Participant ID 009) 3.6.2. Fate Other participants assumed that developing PCa was beyond their control. These participants attributed their health outcomes to fate: ‘‘I think it’s just a matter of you getting it or not. I don’t think you have any control over it.’’ (Participant ID 004) 3.7. Health-based risk comparisons Risk comparisons appeared to reduce risk perception among participants. Men reported concern for other illnesses:

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As you get older and you think. . .so is PCa the worst thing to have? I mean compared to other kinds right, including liver, including pancreatic, the lung, I mean there’s many other things that are just as lethal in my view. (Participant ID 015) 4. Discussion and conclusion

Walter et al. [12]: A theoretical framework of how persons with familial risk develop and manage their personal sense of vulnerability


Findings from the present study

New Affected Relative

4.1. Discussion An overview of our findings suggests that risk perception development is a dynamic process significantly affected by environmental and personal experience. This conclusion is similar to that reported by Walter et al.: ‘‘The development of a personal sense of vulnerability is not a linear process, rather it is an intermittent, dynamic process based on continuing interpretation and evaluation of new experiences’’ [26]. The relevance of this finding, given the variable influence of risk status volatility on screening behaviour and emotional lability, is the opportunity for healthcare screening practitioners (e.g. physicians and genetic counsellors) to assist patients in stabilizing their risk experience. 4.1.1. Interpreting superordinate themes In assessing the impact of media sources, we observed triggering effects on risk concepts that resulted in increased risk perception. In some cases participants tempered impacts by paying considerable attention to contextualizing novel information in relation to other factors. It appears that without careful, conscientious integration of multiple factors, media exposures reliably resulted in increases in risk perception and anxieties about PCa development. Similarly, the net results of patient-directed searches for information were increases in risk perception, although effects were less rapid and severe. This might have been due to the more active efforts involved in teasing out potentially meaningful ‘data’ from accumulated information. Nonetheless, active searches also led to patients becoming overwhelmed and confused. It seems that with unprecedented access to information (e.g. via the Internet) and modest understandings of analytic strategies, patients were vulnerable to information overload and struggled in organizing information to meaningfully inform risk status. The confusion appeared to contribute to uncertainties and increases in vulnerability. An unexpected finding was that physician communication appeared to increase participants’ risk perceptions. We believe, however, that the increasing impact on perceived risk should be interpreted cautiously. Firstly, the setting for this study was in a high risk clinic of a cancer-specific hospital. Secondly, all participants were treated by the same oncologist and the participants appeared to be reflecting back on their first meeting with the oncologist. The confirmation of their risk status by the oncologist seemed to force participants, at least at the outset, to acknowledge elevated risk status. What is suggestive that physician communication may also decrease risk perception is our finding that overall involvement in a PCa screening clinic decreased risk perception. Participants explained that active medical surveillance via oncologist follow-up provided them some confidence that if progression to PCa occurred, it would be identified early and treated successfully. Thus physician identifications of elevated risk at the outset may increase risk perception, but later contact through ongoing screening may result in a net positive effect on emotional distress and risk perception. Our finding that participants’ illness beliefs and causal attributions were found to influence risk perception is not a new finding in the health beliefs literature. The process of ascribing control to oneself or to external sources is captured in the social psychology literature by a theory known as Attribution Theory, and specifically by the causal dimension known as locus of control (see,


Exposure to Affected Relative

Personalizing Process

Illness Beliefs

Personal Sense of Vulnerability

Risk Information Pathways

Coping & Control

Health-Based Risk Comparisons Exposure to Prostate Cancer Screening Experience with Other Prostate Diseases Lifestyle Factors

Fig. 2. Integration of present study findings with the theoretical framework of how persons with familial risk develop and manage their personal sense of vulnerability.

Heider [27], Jones [28], Ross and Nisbett [29]). It is believed that some attributions are rooted in personality traits and are not easily changeable, but most are perceptions and, as such, are receptive to change (via education and counselling). Our observations in this study and previous research in the breast/ovarian cancer literature [6,30] suggest that health-related risk perceptions are amenable to change/correction. That a patient’s risk perception, as it relates to illness beliefs, can be modified is important in cases where distorted risks lead to maladaptive beliefs (e.g. fate) and behaviours (non-adherence to screening programs, unhealthy lifestyle choices) and increased psychological distress. It is our clinical hope that the themed-based findings of this study may be useful as an initial step in informing the development of such screening and genetic counselling strategies that result in patients maintaining a more stable and accurate risk perception. 4.1.2. Superordinate themes and theory In determining a theoretical framework explicating risk perception among men with a family history of PCa we found that our findings could be conceptually captured and theoretically organized by Walter’s et al. theoretical framework: how persons with familial risk develop and manage their personal sense of vulnerability. To understand factors affecting a lay person’s understanding of familial risk, the theory emphasizes 3 relational components: (1) salience; (2) personalizing processes; and (3) personal sense of vulnerability [12] (Fig. 2). Salience refers to the acknowledgement that a disease runs in the family. The theory recognizes that salience is influenced by both medical and personal experience factors. Medical factors shown to affect salience include the number of affected relatives and age at time of diagnosis. Personal factors such as experiencing a relative’s illness also appear to impact salience. Our finding, Exposure to Affected Relative, aligns with the model in acknowledging influence of personal experience on risk and salience, and


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underpins the bidirectional influence of experiencing a relative’s illness depending on traumatic versus successful disease outcome. The personalizing processes accounts for a person’s belief about disease causation and inheritance. In Walter’s et al. synthesis of the research it was determined that risk perception and disease causation were multifactorial and incorporated environmental, behavioral, personal belief, and inherited factors [12]. Our superordinate theme, Illness Beliefs, is similar to this research and illustrates the influence of personal beliefs such as fate, chance and the possibility of modifying chance. Personal sense of vulnerability describes outcomes of processing one’s acknowledgement of familial risk (salience). Additionally, the theory states that it is one’s sense of vulnerability that affects coping and controlling strategies. The majority of our themes inform this part of the theoretical framework: Risk Information Pathways, Experience with Other Prostate Diseases, Exposure To PCa Screening, and Health-Based Risk Comparisons. One theme, Lifestyle Factors, appears to fit into the coping and controlling aspect of personal vulnerability. It is our research hope that the themed-based findings of this study may be helpful in supporting and expanding Walter et al.’s [12,26] theoretical framework of how persons with familial risk develop and manage their personal sense of vulnerability. 4.2. Conclusion The significance of this study lies in its potential beneficial influence on patient – healthcare screening practitioner communication. Research indicates genetic counselling impacts the accuracy of individuals’ risk perception, that more accurate perceptions facilitate positive risk adaptation, and that counselling itself assists individuals in adapting to their personal risk [12]. A more comprehensive understanding of factors contributing to risk perceptions could help physicians and counsellors better assist patients understand and approach their risk in a healthier manner. Moreover, our findings suggest that screening physicians and genetic counsellors can play significant roles in helping patients adopt ‘‘personal influence illness beliefs’’ that provide a foundation for healthy lifestyle change combined with referrals to appropriate healthy lifestyle programming. Taken together, the outcome of successful risk status and genetic counselling, could be healthier, screening-adherent, less distressed patients with more stable, more accurate perceptions of risk. An essential limitation of this study is the homogeneous nature of the sample. The majority of patients attending the PCPC are highly educated and have a high socio-economic status. Consequently, meaningful purposive sampling was unavailable within the study timeframe forcing us to rely on consecutive sampling. Given the complexity of the factors found to influence risk perception in this study, it is unlikely that these factors capture the experience of men of different cultural backgrounds, education, or socio-economic status. This fact limits the generalizability of our findings. Given that these results reflect the experience of participants attending a screening program, we cannot assume that they reflect the risk perception formulation experience of people with a family history of cancer who have not presented for screening. Assessment of the factors that influence the formulation of risk perception among men with a family history of PCa who are not currently engaged in PCa screening is an important next step in this area of research. 4.3. Practice implications Screening physicians and genetic counsellors should attempt to identify patient-specific risk concepts which result in fluctuations in patient-reported risk perception. Incorporating education and

counselling into each screening visit may be considered to help maintain stable and accurate risk perceptions. Conflict of interests The authors declare that they have no competing interests. I confirm all personal identifiers have been removed or disguised so the persons described are not identifiable and cannot be identified through the details of the story. Acknowledgements This work was supported by the Princess Margaret Hospital Foundation and the generosity of Jack and Anne Weinbaum and Family. Appendix A. Semi-structured interview schedule 1.0 DEMOGRAPHIC INFORMATION 1. What is your age? 2. What is your ethnic background? 3. What is the highest level of education you have achieved? 4. Are you currently employed? If not, what is your current status? If yes, do you work full time or part-time? (If participant is retired, ask about his previous employment) 5. What is your marital status? 6. Do you have any children? If yes, how many sons do you have? How many daughters do you have? How old are your children? 7. Do you live in an urban or rural region? 8. When did you begin being screened for PCa? How old were you? How often are you screened? 2.0 OPEN ENDED SECTION 2.1. PERCEPTION OF RISK OF DEVELOPING PCA 1. What brought you to this clinic?  Where did you get the information about your elevated risk of PCa? 2. What do you think your chance of developing PCa is (i.e. what is the percent likelihood that you will develop this disease)?  Would you classify ____percent as lower, higher or the same as the risk for most men? 2.2 FACTORS AFFECTING RISK PERCEPTION 3. What factors or things did you take into account to form this opinion? 3.0 STRUCTURED SECTION (Based on Literature Review) 3.1 FAMILY EXPERIENCES AND PERSONAL SIGNIFICANCE 1. Other research findings suggest that family experiences with cancer impact how an individual feels about his chance of developing cancer. Do you agree with this? 2. What is your family history with respect to PCa?  How old were each of your family members when they developed PCa?  Are any other individuals in your family being screened for PCa? 3. What is your family history with respect to other cancers? 4. What is the experience of your family member(s) with respect to cancer? 5. Tell me what your family member(s)’s experience with cancer was like for you? 6. What is it like to have a family history of PCa?  Does it have an influence on the way you think about things? 7. What part of your family history affects you?  What affects you the most? 8. Now that you’ve had some time to think about PCa, what are the things that stand out for you or are most important to you with respect to how you put together your risk of developing this cancer?

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