Public perceptions of the harms and benefits of testicular cancer education: A qualitative study

Public perceptions of the harms and benefits of testicular cancer education: A qualitative study

Cancer Epidemiology 34 (2010) 212–219 Contents lists available at ScienceDirect Cancer Epidemiology The International Journal of Cancer Epidemiology...

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Cancer Epidemiology 34 (2010) 212–219

Contents lists available at ScienceDirect

Cancer Epidemiology The International Journal of Cancer Epidemiology, Detection, and Prevention journal homepage: www.cancerepidemiology.net

Public perceptions of the harms and benefits of testicular cancer education: A qualitative study Ruth E.C. Evans, Alice E. Simon, Jane Wardle * Department of Epidemiology and Public Health, University College London, Gower Street, London WC1E 6BT, United Kingdom

A R T I C L E I N F O

A B S T R A C T

Article history: Accepted 9 December 2009

Background: The value of testicular cancer (TC) education, and in particular advice on testicular selfexamination (TSE), has been widely debated by health professionals. One concern centres on its potential to cause unnecessary anxiety among the target population. Views outside the health professional community about TC education’s potential benefits and harms have not previously been described. The objective of this study was to investigate the range of views expressed by specific groups thought to have an interest in provision of TC education. Methods: One-to-one, in-depth interviews with 37 men and women were completed. Participants included TC patients, men with no prior diagnosis of TC, and parents and teachers of adolescent boys. Verbatim transcripts were analysed using the Framework approach to produce a thematic description of views expressed. Results: Participants were unanimously in favour of TC education. Key perceived benefits included earlier cancer detection through increasing knowledge of symptoms leading to better treatment outcomes, and motivating help-seeking by reducing emotional barriers such as fear of cancer or embarrassment. Anxiety was acknowledged as a possible harm but was not expected to be widespread or serious. Conclusion: TC education is viewed favourably by members of the public likely to be interested in its provision. Education’s potential to cause anxiety was not considered a disincentive to promoting disease awareness. ß 2010 Elsevier Ltd. All rights reserved.

Keywords: Self-examination Testicular neoplasm Health education

1. Introduction In the late 1980s and early 1990s, clinicians and researchers called for public education campaigns to increase awareness of testicular cancer (TC) in the healthy population and help-seeking among those with symptoms [1,2]. In response to these requests, a variety of education programmes at both national and local levels have been launched, in the UK and elsewhere [3–7]. However these initiatives have attracted some criticism and controversy, particularly in the UK [8,9]. The two primary concerns have been (i) lack of epidemiological evidence demonstrating the benefit of a frequently advocated means for early detection – testicular self-examination (TSE), and (ii) the potential for cancer-related information to cause unnecessary anxiety (a concern based within the broader debate about the appropriateness of cancer control and secondary prevention education generally). While it is generally agreed that earlier diagnosis would mean less intensive treatment, concerns have been expressed in the context of a disease that is rare (although on the increase), and for which treatment is so successful that even in late stage disease, cure rates are in excess of 95% [10–13].

* Corresponding author. Tel.: +44 020 7679 8306; fax: +44 020 679 8354. E-mail address: [email protected] (J. Wardle). 1877-7821/$ – see front matter ß 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.canep.2009.12.008

Consequently, there is ambivalence over the policy of recommending TSE. For example in the US, TSE is not endorsed by the US Preventive Task force [14], but the American Cancer Society frames it as a personal choice, and provides instructions on carrying out monthly self-exams [15]. Public opinion has largely been neglected in the debate about the value of TC education. However in the wider health context, the voice of the public has become more important, and health policy makers have increasingly sought to engage the public in policy decisions (for example the ‘Your Health, Your Care, Your Say’ initiative organised by the Department of Health in the UK [16]). Health professionals on both sides of the debate, in Europe and in the US, have offered opinions on the benefits and harms of TC education [17–21]. However, it is not clear whether the public share these views. The benefit of TSE is often described in public health terms, i.e. cost–benefit at a population level [22,23]. However, TSE is an individual behaviour and some have questioned whether it is appropriate to evaluate its benefit using these criteria [24]. Describing public opinion about the benefit of TC education may be helpful in enriching the debate about its value. Knowledge about, and attitudes towards, cancer (as well as health beliefs and behaviours), are associated with a variety of individual factors such as age, gender, education, and experience of illness [25–29]. It is therefore important to include a variety of different groups to capture the potential diversity in views and to

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particularly consider the views of those likely to be recipients of TC education. Previous studies have found that even males at risk of developing TC (either through age or genetic risk) have low TC knowledge and do not engage in TSE practices [30–33]. These men are therefore not only most likely to be affected by the disease, but are also the primary target of any educational initiative. Consequently, they should be given priority in expressing their views. Because of the unusual age profile of those at risk (TC can develop from puberty) some voluntary organisations have developed education initiatives to target school-aged males [3]. Parents and teachers are likely to play a role in delivering this education or supporting adolescents, so their views are important too. Finally, patients are likely to offer an important perspective given their personal experience with TC and resultant encounters with the health system. This present study therefore examined attitudes towards TC and TSE education in a sample that may have a particular interest in the issue by virtue of their age, previous illness experience, parental role, or occupation. Specifically we aimed to explore attitudes towards TC/TSE education and examine the range of perceived benefits and harms. 2. Materials and methods

they were willing to do an interview. Recruitment was done from consecutive clinics over a period of 2 months until the quota of age, educational attainment and illness experience was achieved. Eight men with no history of TC were recruited from a financial business in Kent, UK. The initial approach was made via the human resources department who sent an email request for volunteers for a project about men’s health to a randomly selected group of employees (n = 30). Eleven participants responded and were sent a demographic form asking for details of their age and educational background; from this, eight were selected for interview. Twenty parents and teachers were recruited from two schools in Surrey, UK (one private, one state funded). A letter of invitation was circulated to parents of students (n = 108;160) in year 9 (aged 14–15 years) and teachers who were involved in pastoral care or education on topics related to personal and social care, to this age group (n = 40;50). With this letter a demographic questionnaire and consent form were enclosed. Thirty-five replies were received from parents and seventeen from teachers. From this pool, eight parents and seven teachers were recruited. The first five of the interviews (2 teachers, 2 men at risk and 1 man with a prior TC diagnosis) also assessed the acceptability of the interview topics and interviewer. As the content of the interviews was scarcely modified after this pilot phase, these interviews have been included in the main analyses.

The interview sample comprised 37 adult participants drawn from four sub groups (i) men (n = 10) from the population within the maximum age at risk of TC (15–55), (ii) men who had a prior diagnosis of TC (n = 10), (iii) parents of adolescent boys (n = 8), and (iv) teachers (n = 9) of adolescent boys. The sampling strategy aimed to capture the diversity of views, so within each subgroup, participants were selected to ensure there was a variation in age and educational attainment. The parent and teacher groups were balanced for gender, and within the TC diagnosis group, participants were selected to ensure variation in tumor type. The ability to give written consent was also an inclusion criterion. Beliefs and attitudes about TC and TSE education were ascertained using one-to-one, semi structured, in-depth, qualitative interviews. A topic guide was developed for each group of participants. This covered the topics listed in Table 1, although the ordering and emphasis on each topic varied depending on what was most relevant to participants. Each interview lasted between 45 and 90 min and consisted of open-ended questions followed by probes to elicit further clarification. Interviews were conducted at a variety of sites: hospitals clinics, workplaces or individuals’ homes, as the interviewees chose. Interviews were audio taped and written consent obtained for doing so. Author RE carried out all the interviews. The study was approved by UCLH/UCL Joint Ethics Committee. Participants were recruited from a variety of sources from June 2004 to January 2005. Nine men were recruited from a London hospital urology out-patients clinic. The initial approach was made by the consulting doctor, who explained the study, men who were interested were given further written information on the study and a consent form, and they were contacted 48 h later to find out if

2.1. Analysis

Table 1 List of topics covered in interviews.

3.1. Sample characteristics

Item no.

Topic description

1

Perceptions of cancer generally (e.g. beliefs about cancer cure, control, and prevention) Perceptions of testicular cancer Attitude towards educating school age adolescents about testicular cancer and testicular self-examination Experiences of cancer first hand and vicarious

2 3

4

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Interviews were transcribed verbatim and analysed using the Framework approach [34]. Analysis began with an initial reading of the transcripts to identify key themes arising from the data. Thematic ‘charts’ were then developed from the identified themes which consisted of excel spreadsheets with the columns labelled with themes and sub-themes. Relevant data was summarized from each transcript, taking care to retain the content and language of the participant, and data for each interview were entered as a separate row of the spreadsheet. With this approach a descriptive account of the data was produced detailing the range of attitudes and beliefs expressed by participants with reference to the factors underpinning them. By working with summaries of the original data that retains participants’ terms of reference, the analysis remained grounded in the data. An experienced qualitative researcher (AS) assisted with assessing the validity of the analyses. Approximately 20% of the interview transcripts were charted and the remaining chart entries reviewed by AS to familiarize herself with the content of the interviews and judge whether the matrix content accurately represented it. AS also then reviewed the thematic analyses and compared them to the content of the matrix for the whole sample and made a judgment on its inclusiveness and accuracy of representation. AS was satisfied that the summary presented here reflected the content of the matrixes and that they reflected the original transcripts. No adjustments were made following the review. 3. Results

Across the sample there was a range of ages (24–56) and levels of educational attainment (see Table 2). The sample was biased towards degree level education, partly because of the inclusion of teachers who are all trained to graduate level. The sample was largely white and of British origin. Among the men with a diagnosis of TC, there was a range of tumor types and treatment experiences, as well as time intervals between diagnosis and interviews. Approximately half of the teachers had personal experience of

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214 Table 2 Demographic summary of participants by sub group.

Men with prior TC (n = 10)

Men at risk (n = 10)

Teachers (n = 9)

Parents (n = 8)

Gender Men Women

10 –

10 –

4 5

4 4

Age 20–30 years 31–40 years 41–50 years 51 plus

1 4 3 2

3 4 2 1

3 3 1 2

– 1 5 2

Ethnicity White British White Other Asian Mixed

8 1 1 –

10 – – –

7 1 – 1

7 1 – –

Education Left school at 16/17 (with or without qualifications) Some post-compulsory education Higher education (degree)

4 1 5

1 3 6

– – 9

3 – 5

TSE practice Regular Irregular Never Missing data/NA

2 1 4 3

2 4 4 0

2 0 1 6

2 1 1 4

Cancer diagnosis Seminoma Teratoma Mixed

4 4 2

– – –

1 – –

Patient recognition of tumor Incidental Through self-examination

9 1

– –

1 –

Median patient delay (range) Median time since diagnosis (range)

2.5 weeks (1 day–52 weeks) 4 years 9 months (4 months–12 years)

– –

2 months 1 year 6 months

Treatment Orchidectomy + surveillance Orchidectomy + radiotherapy Orchidectomy + chemotherapy Chemotherapy + surgery

5 1 3 1

– – – –

– 1 – –

– – – –

Experience of delivering TC education in school Yes No

1 –

– –

4 5

– –

teaching TC education to adolescents (n = 4). All participants had heard of TC, although knowledge levels varied, being extremely high in the patient group. 3.2. Endorsement of TC education Participants were unanimously in favour when asked directly about public education on TC, and there was universal support for education in schools among parents and teachers. There was a sense of surprise that anyone could, or would, answer no to this question, because education per-se was seen as a good thing, ‘‘Knowledge is power it’s the best defense, the more you have the better’’ (male, 42, parent). It was seen as always better to be informed than not, particularly about a disease that was perceived

to be a potential threat to life: ‘‘You can’t say no to that can you? The answer is yes because if people don’t know then they don’t know the risks, and ignorance is not a state one would want to preserve for something like this’’ (male, 53, no diagnosis). The specific benefits of TC education were perceived as promoting early detection and reducing barriers to help seeking. There was less unanimity in discussions about the value of TSE advice, ‘‘I don’t think you need to tell men to check themselves that regularly, ‘cause I think based on my experience they will know if something is wrong. I think you need to educate them to actually do something if they find a lump, that’s more important’’ (male, 31, diagnosis). Table 3 illustrates the number of participants within each group that endorsed TC education, and the number that identified benefits, harms and moderators of harms

Table 3 Number of participants that endorsed TC education, and number that identified benefits, harms and moderators of harms. Benefits of TC education

Men at risk (n = 10) Men with prior TC (n = 10) Parents (n = 8) Teachers (n = 9) Total (n = 37)

Harms of TC education

Moderators of anxiety

Endorsement of TC education

Early detection important

Reduce barriers to help-seeking

TSE of value

Anxiety

Content/delivery of information

Emotional coping styles

10 10 8 9 37

5 7 2 4 18

3 6 2 4 15

8 7 7 8 30

6 6 3 5 20

7 5 5 7 24

1 1 1 3 6

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3.3. Benefits of TC education 3.3.1. Early detection is beneficial Education was perceived to have a protective effect through increasing the likelihood of early detection, helping men to know what to look for (i.e. increase symptom awareness), and encouraging them to seek help promptly after identifying a symptom. This was particularly the case for men who had personal experience of TC, where early detection was believed to increase survival and reduce the toxicity of treatment. Perceived benefits of reduced treatment included lowering the risk of sterility, as well as less hospital time, which was thought to have benefits both for the individual and the economy (less time off work, reduced medical costs). One participant involved in a TC awareness charity noted that the tumor size at diagnosis had decreased by 40% in recent years, which he attributed to education campaigns. Perceptions of how curable cancer is varied across the sample from fatalistic beliefs ‘‘when someone contracts cancer it’s terminal’’ (male, 33, no cancer diagnosis) to more optimistic attitudes ‘‘in many cases of cancer, things can be done to get rid of it, or at least control it if it’s found early enough’’ (female, 56, parent). Representations of cancer curability appear to have been informed by personal or vicarious experiences of cancer e.g. ‘‘liver cancer spells death. . . that’s seems to be my experiences - you know - of how it has ended’’ (female, 30, teacher). There was recognition of distinct ‘emotional’ and ‘rational’ representations of cancer outcomes, with people having a ‘‘gut feeling’’ that cancer was incurable but acknowledging that treatments and prognosis had improved. This dissociation of representations may account for why some participants, despite being pessimistic about cancer outcomes, still expressed enthusiasm for promoting cancer awareness and valued early detection. For example, one participant with fatalistic perceptions still teaches his students about testicular and breast cancer and selfexamination, because he feels ‘‘it’s essential’’. He also referred to the need to prevent or reduce cancer’s impact. 3.3.2. Education can reduce barriers to seeking help for testicular symptoms Seeking help for testicular symptoms was recognized as a problem by participants in all subgroups. Barriers to seeking help for testicular symptoms were frequently described as obstacles that could be overcome by education (particularly endorsed by men with a prior cancer diagnosis), and therefore referred to as justifications for public education. The barriers identified included low disease awareness and emotional factors such as fear of cancer and embarrassment. Low disease awareness was attributed to failures in lay knowledge transmission, with some participants suggesting that men do not talk to each other about TC. Reasons for this included: it being private or perceived to be unimportant, e.g. ‘‘awareness of the importance of this thing is lacking’’ (male, 30, no diagnosis), or how it might make them look if they discussed problems with the testis, ‘‘anything wrong. . .has this inference of reduced sexual prowess’’ (male, 42, diagnosis). Parents reported that they found it difficult to discuss the topic with their sons because they lacked medical knowledge, ‘‘not all parents are doctors or nurses’’ (female, 56, parent), were a single parent family without a male to provide ‘practical know how’, or because it would cause embarrassment. Low knowledge was also attributed to a lack of publically available information about men’s health, with reference made to the disproportionate amount of attention paid in the media to female cancers, breast cancer in particular, although there was some recognition that breast cancer is more common and therefore should be given priority. Teachers referred to gender inequalities in health education within school, noting the absence of a male

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equivalent to the ‘‘tampax talk’’ where girls are given information about female health issues such as menstruation. Public education about TC was perceived as a way of compensating for this failure of information transmission and redress inequalities in provision. Public education was also perceived by one participant to enable unfettered access to information overcoming restrictions due to privilege (e.g. access to occupational health schemes for managerial staff) or men’s reluctance to engage with health professionals (perceived to be gate keepers to health information) ‘‘[men’s health] magazines are now thriving, that’s [a] sort of education program, for men who don’t have the opportunity to be checked, or wouldn’t or just don’t like the idea of going to the Doctor’’ (male, 41,no diagnosis). Education was perceived to have the potential to encourage speedier help seeking through reducing fear and embarrassment by talking more openly about cancer, specifically highlighting the effectiveness of treatments, good recovery rates and promoting survivor stories of high profile sufferers such as Lance Armstrong. Some referred to the belief that knowledge dispels fear through providing an increased sense of control over the threat: ‘‘you fear less something if you know more about it, because you know how to fight it or to control it’’ (male, 27, cancer diagnosis). Another participant referred to the potential of education to emphasize that any embarrassment was outweighed by the potential benefit of disease detection, ‘‘for the sake of ten minutes embarrassment it could save their life you know and if they don’t do it and they get cancer worst case scenario they are going to die where as ten ten minutes embarrassment and they could be cured and they could live another 50 60 years of whatever’’ (male, 31, cancer diagnosis). 3.3.3. Benefits of TSE Differences emerged about the perceived value of TSE advice in promoting early detection. Two broad themes of beliefs emerged, which appeared to influence whether participants thought TSE should be promoted. Firstly, there was a general belief that selfsurveillance is always a good thing, with common sense telling us that being aware of signs and symptoms of disease has to be beneficial ‘‘presumably the first way of spotting anything’’ (female, 51, teacher) and the ‘‘trigger to seek help straight away, an alarm stick’’’ (male, 41, no diagnosis). The belief that breast selfexamination (BSE) is advocated for women, was referred to as a reason for why TSE should be recommended, and both men and women expressed this view. One participant referred to problems with other forms of surveillance, specifically mammography where there is a potential radiation risk, and contrasted this with TSE, where she perceived there to be no side effects, ‘‘a non toxic way of doing screening which is another good reason for doing it’’ (female, 55, parent). The second theme within beliefs related to how TC presents itself to the individual, and this was used in arguments both for and against TSE. Some participants held the view that TC was unusual in that it was one of a few cancers that presents itself obviously, making it easier to detect than other cancers. This rare potential for self-diagnosis was given as a reason for why TSE should be advocated, ‘‘I can’t think of other cancers where you can do selfdiagnosis so in the other 99% of cancers not very many of them can I help myself’’ (male, 44, parent). However, other men felt that the fact that lumps or abnormalities would be (or had been in their case) glaringly obvious and that this was a reason not to advocate TSE because you ‘‘can’t help but notice it’’ (male, 39, cancer diagnosis), ‘‘it just becomes apparent’’ (male, 31, cancer diagnosis). Any delay in diagnosis was suggested to be due, not to a lack of awareness of symptoms, but rather men’s response to them. One man referred to articles in newspapers describing men who had had TC and delayed seeking help, ‘‘they were well aware they had a ridiculous lump. . .the issue wasn’t that they didn’t know’’ (male, 36,

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cancer diagnosis). Other participants felt that detecting abnormalities at an early stage would be difficult because the tumor develops inside the body and only really becomes apparent late on. On the other hand, finding only ‘really big tumors’ was related to a perceived lack of proficiency of carrying out TSE. Some participants highlighted that it is difficult to determine what is normal without medical training, and this made them question the efficacy of TSE. Men’s support for TSE did not seem to be systematically related to their own experiences or preferences for practicing TSE. Men who saw no benefit in TSE did not practice the behaviour, but neither did some men who recognized that there was benefit. How frequently men perceived themselves or others to practice TSE seemed related to whether they represented TSE as a part of their normal behavioural repertoire, or as something outside of this, that required conscious effort: ‘‘most men do it [TSE] by nature, have a good feel in the morning, in the shower’’ (male, 47, parent) vs. ‘‘you’ve got to actually make the mental effort to say, oh today I’m going to examine my testicles to see if I‘ve got cancer,’’ (male, 53, no diagnosis). Men who did check also described how they had built it into a regular routine, such as bathing, and a number of men who did not currently check suggested that this would be a good way to go about starting to check regularly; making it a habit would reduce the mental effort some believed was required. There was also a link between perceiving TSE as ‘an effort’, and not being sure how to go about it. Increased self-efficacy for TSE was seen to be important in encouraging the behaviour, ‘‘don’t think I really know how to examine myself. . .if someone said I was doing it the right way I would check a lot more’’ (male, 30, no diagnosis). 3.4. Perceived harm of TC education When asked about possible harms arising from education, few participants were spontaneously able to offer any reasons why education should not be endorsed, or how it might be harmful, ‘‘I don’t think there is any. I don’t think there’s any harms in respect. If people aren’t doing it [TSE] then what have you lost, you have lost nothing’’ (male, 33, no diagnosis). There was a sense that education was benign and could not have any adverse effects, ‘‘can’t see any negative side effects of giving people advice and information’’ (male, 53, no diagnosis). However, on prompting, some participants were able to elaborate potential harms, with anxiety the most frequently cited possible consequence. The possibility of false positives arising from men detecting benign symptoms was cited as a source of worry. One participant described how his friend, having followed instructions to practice self-examination found something of concern and then experienced ‘turmoil’ deciding whether to seek help for symptoms that turned out to be benign, ‘‘I think obviously some of it was worry because all the scary facts were kind of impressed upon us. . .and then he had almost the angel and the devil on his shoulder you know he had. . .one side of his psyche saying ‘you may have cancer you have got to go . . . and in the other part of the male psyche saying’ well you know I might just be stupid, it may not be a lump it may be something else and I am going to feel really stupid.’’ (male, 31, no diagnosis) Adolescent students were perceived by some as being more vulnerable to anxiety because of their developmental stage (puberty). Boys were described as having strong sex drives with ‘hyped hormones’, already anxious about growing up and conscious of changes in their body, ‘‘I suppose that with 12, 13 and 14 year old boys changes are happening anyway, and if you are not careful you could terrify them’’ (female, 51, teacher). However, other participants felt that students’ perception of being ‘invincible’ because they were young, would have a protective effect, ‘‘because they are children. . .they’ll think ‘oh that’s something that happens to you when you are older and I have got plenty of time yet’’’ (female, 31, teacher).

Some teachers expressed concern that boys might not have the confidence or the opportunity to seek help if worried about symptoms and saw school counsellors as under-used, despite students being told how to access them. Parents believed that their own sons would probably feel able to discuss concerns with them, but there may be others who could not approach their parents. Limitations to the teaching environment were also referred to by some parents and teachers. Concerns were expressed that teachers may not have the adequate training or time to give reassuring answers to questions students may have during the delivery of TC education, ‘‘to have a teacher who does have gaps in their knowledge discussing and talking about that [TC] could cause worries and concerns, just through not being able to sort of fully inform and give the right answers’’ (female, 30, teacher). 3.4.1. Moderating factors to anxiety response In general, the anxiety-inducing potential of education was down-played, with a variety of factors cited as reducing the likelihood of anxiety, or restricting it to a minority group. These factors were categorised into two themes: content/delivery of information and emotional coping styles. Participants suggested that an anxious response could be minimized by providing detailed information and highlighting positive aspects such as the benefits of early detection and the high recovery rate, as well as action that could be taken (TSE and helpseeking), ‘‘you need to tell them the good news’’ (male, 31, cancer diagnosis). Content specifically addressing barriers to help seeking, as well as sign- posting resources that give medical advice and emotional support, were also suggestions for combating anxiety. Within a school context, some parents and teachers felt that psychological distress could be minimized by training teachers to an appropriate level of expertise. Other parents and teachers felt this was unrealistic and preferred the idea of using external ‘expert’ speakers (health professionals or TC patients) who would have sufficient knowledge to answer questions, although one teacher was concerned that external speakers’ lack of rapport with students might inhibit students asking questions. Emotional coping style was also suggested as an influence on the likelihood of an anxious response. However it was felt that this would be limited to a minority of people for whom it was unavoidable, ‘‘Only if they are slightly hypochondriac to start off with. I think some people just worry about their health anyway. I think they will always worry. They will probably worry more the more information they have got. . . some people are like that and I don’t think you can help that really’’ (male, 39, cancer diagnosis). In the context of discussing adult’s responses, there was a sense of discounting anxiety. People who experience an anxious response were characterized negatively, for example as ‘nutters’ by one participant. Others distanced themselves and ‘the typical male’ from an anxious respondent, ‘‘I don’t think blokes would panic too much anyway, it wouldn’t sort of be a mass rush to the local GP to drop your trousers. (laugh) I don’t think the waiting room would be full of people, full of the local guys’’ (male, 41, cancer diagnosis). 4. Discussion The context of this study is a debate about the appropriateness of TC education that has continued over the last 20 years among health clinicians and researchers. While the debate appears to be more prominent in the UK (possibly as a result of issues of resource allocation within the National Health Service), conflicting opinions on the efficacy of TSE are also evident in other countries [17–21]. Unclear recommendations can result in confusion and frustration, as has been the case with the recent revision of recommendations regarding mammographies [35]. In countries where healthcare is privatised, personal costs may be affected, as health insurance

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providers decide on coverage for health visits made on the basis of TSE. Thus far the debate has mainly been confined to academic domains, but occasionally spills out into the public press, as in Brendan O Neill’s criticism of TSE recommendations in an article in The Spectator titled ‘‘What a load of b*ll*cks’’ [36]. Although public opinion has been assessed in relation to cancer detection initiatives among cancer patients (e.g. PSA testing [37] and TC education [38]), we are not aware of any previous study that has attempted to seek the views of members of the wider general public. The interviews we conducted revealed that support for TC education was almost unanimous. Few differences were seen between men who had a prior history of TC and unaffected men and women, with the exception of more of the affected men identifying early detection as an important issue, and more perceiving TC education to have the potential to reduce barriers to help-seeking. The benefit of early detection to maximize cancer survival and minimize treatment was perceived even among people who referred to cancer as being a disease with a poor prognosis. This seems counter-intuitive and contrasts with other research that shows a correlation between fatalistic perceptions of cancer and reduced enthusiasm for early detection screening [39–42]. This dissociation of beliefs sometimes reflected specific knowledge about TC and the particular benefits of early detection, but other people simultaneously held different representations of cancer: an emotional ‘gut response’ that cancer outcomes are bad, and a ‘rational’ representation that acknowledges variation in cancer outcome. Within the latter representation, early detection can be beneficial. The duality of representations of health threats – emotional and cognitive – has been previously described by others [43]. Support for the inclusion of specific TSE advice, over and above general TC education, was not unanimous. Endorsement for promotion of TSE seemed to be related to general beliefs about the benefit of active disease surveillance, as well as specific beliefs about how TC symptoms had or might present themselves to men. The contrast between the unanimous support for education to increase TC awareness, and the variation in opinion for the specific promotion of TSE is interesting because the self-examination component has also been the most contested aspect of TC education in the professional debate. The idea that men are at risk because they know little about TC and generally find help-seeking difficult, are similar to those put forward for other men’s health issues such as PSA testing [37], and reflect the current discourse in men’s health. Suggestions have been made that the health of men is in crisis and needs resolution, and men’s reluctance to engage in health services is cited as a key cause [44–46]. Early surveys of knowledge supported the idea that men were unaware of TC [30–33,47], and although recent surveys suggest that a higher percentage of men now know that the disease exists, specific knowledge, such as age at risk, knowledge still appears to be relatively low [48] Furthermore, perceived lack of knowledge about how to correctly self-examine was identified by a number of men in this study as a barrier to engaging in the behaviour. Men’s reluctance to seek help for TC symptoms and the reasons offered by this sample (emotional barriers of fear and embarrassment), are echoed in other qualitative studies that have explored help-seeking in men with TC, and in relation to cancer symptoms generally [38,49–53]. Participants described how education could help resolve these problems through, for example, increasing knowledge of symptoms and risk factors as well as reducing fear by promoting the effectiveness of treatments. In addition, educators or health professionals could provide information to raise TSE self-efficacy for those wishing to engage in this practice but who are unsure if they are ‘doing it right’. While there is no specific mention of TC or TSE in the national curriculum, some teachers do discuss TSE and

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BSE in the context of personal care in personal, social, health and economic education (PSHE), as evidenced by about half of the teachers in our sample having previous experience of teaching TS education. This proportion is likely to be high, and reflect the fact that teachers within our sample had an interest in TC education. Whilst there is no published data on the prevalence of teaching TC in UK schools to our knowledge, research in the US suggests prevalence is low, with less than half teaching TC and less than a third teaching TSE [54]. As described by one of our participants, females in schools receive the ‘tampax talk’, which provides an opportunity to talk about other female health issues such as BSE. Perhaps a step towards reducing the inequalities perceived in male and female health education in schools, would be to introduce a parallel talk for males, for example combining TC education with the ‘condom talk’. Participants did not spontaneously consider any harms or negative consequences of education about TC. When prompted, the most common consequence suggested was anxiety, but even then many were quick to minimize the likelihood of this outcome, by describing moderating factors related to content and delivery of information, as well as describing it as a minority response. This is similar to findings from two US studies that explored support for cancer screening and attitudes towards possible harm. These studies concluded that the public was very enthusiastic about cancer screening, and their enthusiasm was not dampened by consideration of anxiety-inducing, false-positive results [55,56]. Public perception of the significance of anxiety, combined with experimental studies that have found no increase in anxiety after exposure to interventions aimed at promoting awareness of cancer and its early detection [57–59], suggest that its importance may be exaggerated in the medical and public health literature. 4.1. Limitations We were surprised that a wider range of opinion about TC education did not emerge through our discussions with this diverse group of participants and therefore urge some caution about the representativeness of the findings. Everybody interviewed was supportive of the idea of promoting TC awareness among the male general population including adolescent boys. This homogeneity of responses may be explained partly by the interview leading people to focus on the abstract notion of whether education about TC is beneficial, rather than considering education in practice or their own experiences of it. The endorsement of education may have been on the basis that information would be of some particularly high ‘gold’ standard. Participants did acknowledge some factors that could moderate the effects of education, but this did not dampen their enthusiasm. In contrast to expressions of concern among health professionals, these participants believed that education can always be designed to achieve the benefits desired and minimize downsides. Judgments about the value of education did not appear to take account of any experiences of ‘bad’ education. Also, in contrast to arguments by health professionals opposed to TC education, no participants alluded to the fact that early detection is not always possible, or that some cancers are aggressive and metastasize quickly. The complexity surrounding the evidence of benefit of early detection of cancer including TC is not something that appears to be communicated beyond health professionals and therefore the general public may not be privy to the information that could inform their endorsement of education. Future research could investigate the influence of focusing biases and the limited knowledge of testicular cancer’s natural history. For example, the impact of exposure to education materials that varied in ‘detail’ on participants’ enthusiasm for education could be explored. Similarly, exploring the impact of an

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educational intervention (such as a short TC information film highlighting the variation of tumor subtypes and highly successful treatment even in late stage disease) on attitudes towards TC education may help to better understand how a public health approach utilising educational strategies would be received. The support for education that we found could reflect an element of sampling bias. We set up a sampling frame that enabled everyone from our defined stakeholder groups with strong views for and against TC education, to participate. However, it is difficult to recruit individuals with an aversion to cancer information because they are likely to be motivated to avoid exposure to it, and would therefore not participate in a research study such as this. This may also explain the use of dissociation from ‘nutters’ or ‘hypochondriacs’ who experience negative outcomes from health education and are more likely to have internal barriers to engaging with the health system. Previous research has indicated that cancer worry or increased risk perception following screening or cancer information is an issue for a number of individuals [60,61] and while these individuals may be the minority, it is important they are not ignored. Finally, while our study considered the views of a range of individuals likely to have an interest in TC education, it did not consider the views of partners of men with a TC diagnosis or men’s health care providers. Doctors and paediatricians have a role to play in men’s health education and may be responsible for TC detection. For example, in the US it has been suggested that whilst individual TSE should not be promoted, physicians or paediatricians should provide genital exams to their male patients as part of routine physicals, and should be knowledgeable about potential abnormalities [62]. Providing partners with TC education could also be a potentially important avenue to explore, as a route to additional support and encouragement for men unsure about seeking help. Doctor’s advice or the advice of a partner or family member, particularly when combined with an education initiative, may be instrumental in helping men to overcome barriers to engagement in health services. In conclusion, this study has attempted to widen the debate about the appropriateness and benefit of TC education, by exploring views from men and women in the general public for whom these issues are potentially important. While these findings are preliminary, and require a larger, more systematic study to confirm, we found that people were extremely highly supportive and enthusiastic about education. The reasons cited reflected current discourses surrounding gendered differences in approaches to health and health information, and were consistent with the idea that men need more access to health information. Conflict of interest statement None of the authors in this study have any financial or personal relationships with other people or organisations that could inappropriately influence the work contained within this paper. Role of the funding source Cancer Research UK provided funding for this work in the form of a PhD studentship stipend which supported the work of the first author REC Evans. Acknowledgements The authors would like to acknowledge the contribution of Dr Anne Miles and Dr Jo Waller in the preparation of this manuscript. The authors would also like to thank Dr Stephen Harland in helping to recruit testicular cancer patients to the study.

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