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BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

PRINT AND ONLINE NEWSPAPER COVERAGE OF THE LINK BETWEEN HPV AND ORAL CANCER IN THE UK: A MIXED METHODS STUDY

For peer review only Journal: BMJ Open

Manuscript ID bmjopen-2015-008740

Article Type: Research

Date Submitted by the Author: 11-May-2015

Complete List of Authors: Dodd, Rachael; UCL, Epidemiology and Public Health Marlow, Laura; University College , ; UCL, Epidemiology and Public Health Forster, Alice; UCL, Epidemiology and Public Health Waller, Jo; UCL, Epidemiology and Public Health

Primary Subject Communication Heading:

Secondary Subject Heading: Health services research, Qualitative research

Keywords: Human Papillomavirus, Oral cancer, Media, United Kingdom

http://bmjopen.bmj.com/

on September 24, 2021 by guest. Protected copyright.

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1 2 3 PRINT AND ONLINE NEWSPAPER COVERAGE OF THE LINK BETWEEN HPV AND ORAL 4 CANCER IN THE UK: A MIXED METHODS STUDY 5

6 7 Rachael H. Dodd MSc, Laura A.V. Marlow PhD, Alice S. Forster, PhD, Jo Waller PhD 8 9 10 Cancer Research UK Health Behaviour Research Centre, Department of Epidemiology & Public 11 Health, UCL, Gower Street, London WC1E 6BT, United Kingdom 12

13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27

28 29 30 31 32 33

34 http://bmjopen.bmj.com/ 35 36 37 38 39 40 Keywords: Human papillomavirus, oral cancer, media, United Kingdom 41

42 on September 24, 2021 by guest. Protected copyright. 43 Word Count: 4194 44 45 46 Corresponding author: 47 R Dodd, Health Behaviour Research Centre 48 Department of Epidemiology and Public Health 49 50 UCL 51 Gower Street 52 London WC1E 6BT, UK 53 54 [email protected] 55 Tel: +44 (0)20 7679 8234 56 57 Fax: +44 (0)20 7679 8354 58 59 60 1 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 2 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 ABSTRACT 4 5 Objectives: The role of human papillomavirus (HPV) in some oral cancers has been reported in the 6 7 news press. Little is known about the content of these articles. This study aimed to examine how 8 frequently the link between HPV and oral cancer has been reported in the news press and to examine 9 10 the content of these articles. 11 12 13 Design: UK media articles were searched for articles relating to oral cancer and HPV in the database 14 15 NexisUK. Of 854For articles identifiedpeer by the initial review search, 112 were eligible only for inclusion (20022014) 16 17 and content analysis was used to determine the main themes discussed. 18 19 Results: Themes included: actor Michael Douglas’ claim that his throat cancer was caused by HPV, 20 21 the riskiness of oral sex, health information (including HPV as a cause of oral cancer) and the need to 22 23 vaccinate boys against HPV. Many articles also referred to the link between HPV and 24 25 and the increasing incidence of HPVrelated oral cancer. The largest peak in articles occurred when 26 27 Michael Douglas discussed his cancer (June 2013). Facts about HPV and references to research 28 29 were provided in some articles. 30 31 Conclusions: The link between HPV and oral cancer and the transmission of HPV via oral sex was 32 33 regularly discussed, yet coverage often lacked detailed health information. This could increase

34 http://bmjopen.bmj.com/ 35 awareness of the link between oral sex and HPV risk, but may also lead to public concern about this 36 37 sexual behaviour. 38 39

40 Article summary 41 Strengths and limitations of this study: 42 on September 24, 2021 by guest. Protected copyright. 43 44 • This is the first study to examine the content of newspaper articles addressing the relationship between 45 HPV and some oral cancers. 46 47 • Using NexisUK to examine UK media coverage of the link between HPV and oral cancer provides a 48 49 systematic analysis of a large number of publications. 50 51 • This study is limited to UK publications and to print and online media, so the results may not be 52 53 representative of wider information available to the public. 54 55 • The articles in the study were only examined for content and not for accuracy of the information 56 57 presented. 58 59 60 2 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 3 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 INTRODUCTION 4 5 Traditional risk factors for oral cancer are tobacco and alcohol, but there is now overwhelming 6 7 evidence that human papillomavirus (HPV) plays a causal role in some types of the disease [1–4]. At 8 9 least 25% of the estimated 85,000 oropharyngeal cancers diagnosed worldwide in 2008 were HPV 10 11 positive [5]. HPV is a common sexually transmitted infection, with high risk types shown to be 12 13 responsible for up to 5% of all cancers worldwide, particularly cervical and other anogenital cancers 14 15 [6]. The main Forrisk factors forpeer transmission of reviewHPV are thought to be aonly greater number of sexual and 16 17 (for oral infection) oral sex partners [7–10] due to greater exposure to the virus. As the media has 18 been shown to influence people’s beliefs [11] and is considered a major source of health information 19 20 for many [12], it is possible that media coverage of the link between HPV and oral cancer may 21 22 influence public awareness and perceptions. 23 24 25 The British media is no stranger to reporting stories about people in the public eye with cancer, most 26 27 notably the stories of Jade Goody (an English personality), (an 28 29 Australian singer/songwriter) and Angelina Jolie (an American actress). Metcalfe and colleagues 30 reported that an increased public interest in disease prevention can follow a celebrity diagnosis [13]. 31 32 In the UK, the case of Jade Goody (who died of cervical cancer) was associated with an increase in 33

34 the number of women attending cervical screening [14]. However, media reports are sometimes http://bmjopen.bmj.com/ 35 36 criticised for the lack of detail they provide, for example with the announcement of Angelina Jolie’s 37 38 double mastectomy many failed to give information about the rarity of her condition [15]. In 2013, 39 40 American actor Michael Douglas disclosed in an interview with The Guardian newspaper that his 41 throat cancer was ‘caused by HPV which actually comes about from cunnilingus’. This disclosure

42 on September 24, 2021 by guest. Protected copyright. 43 received global attention, giving the media an opportunity to discuss the link between HPV and oral 44 45 cancer. 46 47 48 Prior to the introduction of the HPV vaccination in 2008, public awareness of HPV (primarily in the 49 50 context of cervical cancer) was measured in populationbased studies to be between 25 and 50% 51 52 [16,17]. The HPV vaccination attracted a lot of media attention [18] and knowledge of HPV appears to 53 have increased following its introduction [19]. An online survey across the UK, US and Australia 54 55 following the introduction of HPV vaccine showed 61% reported having heard of HPV [20]. 56 57 58 59 60 3 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 4 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 In the oral cancer context, dental hygienists in North Carolina were found to have low knowledge of 4 5 HPV as a risk factor for oral cancer compared with tobacco and alcohol [21]. In a US population 6 7 based online survey, HPV was recognised as a common risk factor for mouth and throat cancer by 8 fewer than 1% of participants, and even when prompted explicitly about the link, just 13% said they 9 10 had heard of the association [22]. In an internet survey of men, a greater proportion linked HPV with 11 12 genital warts than with oral cancer, with 43% identifying infection with HPV as a potential cause of 13 14 oral cancer [23]. 15 For peer review only 16 17 Public awareness of the signs and risk factors for head and neck cancer has also been shown to be 18 poor [24–26] and the majority of oral cancers are diagnosed at an advanced stage [27]. Oral health 19 20 providers have expressed concern about appropriate communication regarding HPVrelated oral 21 22 cancer [28]. 23 24 25 Media coverage is one route through which public understanding of this issue might be improved, but 26 27 little is known about British media coverage of the link between HPV and oral cancer. The media has 28 29 been shown to be a common source of information about HPV [17] and greatly influences public 30 opinion, and as such it is crucial to examine how the link is portrayed by the British media. As the 31 32 media may play an important role in fulfilling the information needs of the public, examining the 33

34 content of articles will establish what information is being conveyed and how this is communicated. http://bmjopen.bmj.com/ 35 36 This study aimed to examine how frequently the link between HPV and oral cancer has been reported 37 38 in the news press and whether this has changed over time. The study also aimed to examine the 39 40 content of the articles, in particular looking at the main topics reported and how the link between HPV 41 and oral cancer has been presented.

42 on September 24, 2021 by guest. Protected copyright. 43 44 45 46 47 METHOD 48 49 The NexisUK database was used to search for print and online articles in the UK relating to HPV and 50 51 oral cancer. NexisUK is an online database providing full text access to international, national and 52 53 regional news sources, and is updated daily. The search was conducted on the 20th August 2014 with 54 55 no date limits applied. The search terms ‘oral cancer’, ‘mouth cancer’, ‘throat cancer’, ‘oropharyngeal 56 57 cancer’, ‘head and neck cancer’ were entered into the database separately, limited to major mentions 58 59 60 4 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 5 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 (in the headline, lead paragraph or indexing) and combined with [HPV OR human papillomavirus] 4 5 within UK publications. Newswire and nonbusiness news publications (e.g. obituaries, sports) were 6 7 not searched. The full text of each publication was reviewed by RD. Newspaper articles were 8 9 categorised as “broadsheet” newspapers (more intellectual in content), “middle market” newspapers 10 11 (coverage of entertainment and important news stories) and “tabloid newspapers” (reporting mostly 12 on sensational material). 13 14 15 Quantitative ForAnalysis peer review only 16 17 The frequency of reporting of the link between HPV and oral cancer was analysed using a frequency 18 19 count. The number of articles per month reporting the link was plotted from the first publication to the 20 21 most recent publication. 22 23 Qualitative Analysis 24 25 26 The content of eligible articles was analysed using Framework Analysis [29]. RD first familiarised 27 28 herself with the content by reading through all the eligible articles, making notes of recurring themes 29 30 and summarising each article. Using the qualitative package NVivo 10, these data were coded, 31 32 summarised and organised into a matrix, with each row representing an article and each column 33 representing a theme. The codes were organised into a hierarchy of main themes and subthemes. 34 http://bmjopen.bmj.com/ 35 AF coded 20% of the articles to test interrater reliability. Second coding of 20% of the articles has 36 37 been considered sufficient in similar studies [30,31]. Cohen’s Kappa was 0.68 representing a 38 39 substantial agreement [32,33]. Any disagreements were resolved by discussion and the remaining 40 41 articles were coded by RD alone.

42 on September 24, 2021 by guest. Protected copyright. 43 44 45 46 RESULTS 47 48 49 Article characteristics 50 51 A total of 854 UK articles were identified. Articles were excluded if they were i) duplicates (articles 52 53 published around the same time, with the same number of words in the same publication and 54 55 duplicating text) (n=477); ii) were published in a specialist magazine or publication (n=80); or iii) did 56 57 not mention the link between oral cancer and HPV (n=32). Following these exclusions, 265 articles 58 59 60 5 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 6 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 were eligible for inclusion in the quantitative analysis. An additional 153 articles were excluded from 4 5 the qualitative analysis because they included fewer than 100 words about the link between oral 6 7 cancer and HPV. These articles tended to include a sentence about the link between HPV and oral 8 cancer as part of a story with a different focus; they did not have sufficient text to merit qualitative 9 10 analysis. Overall 112 articles were suitable for the qualitative analysis. 11 12 13 The newspapers with the greatest number of articles eligible for qualitative analysis were The Times 14 15 (n=16), MailOnlineFor (n=10), Thepeer Guardian (n=8) review and only (n=9). Broadsheet newspapers 16 17 accounted for 54% of the articles, 17% were from middlemarket newspapers and 29% were from 18 tabloid newspapers. With regards to average length, broadsheet articles tended to be longer (530 19 20 words average), followed by those in middle market newspapers (498 words average), with tabloid 21 22 newspapers having the shortest (444 words average) articles. A fairly small proportion of articles 23 24 (18/112; 16%) articles were published in regional papers. 25 26 27 Quantitative analysis 28 29 No UK publications reported the link between HPV and oral cancer prior to 2001. Figure 1 shows the 30 31 number of articles published per month mentioning the link between HPV and oral cancer. There was 32 33 a steady number of articles reporting on the link, but for most years, on average, fewer than two

34 http://bmjopen.bmj.com/ 35 articles were published per month across the newspapers. The largest number of articles reporting on 36 37 the link between HPV and oral cancer was seen in 2013 (112/265). Broadsheet newspapers first 38 39 reported that there was a link between HPV and oral cancer in October 2001, followed by tabloid 40 newspapers in February 2004 and middle market newspapers in November 2009. 41

42 on September 24, 2021 by guest. Protected copyright. 43 There was a noticeable peak in June 2013 (45/265) when Michael Douglas discussed his throat 44 45 cancer being caused by HPV. There were a few small peaks in articles published in May 2007 46 47 following a research paper which further demonstrated the link between oral sex and throat cancer [7] 48 49 (6/265), in March 2012 (7/265) reflecting the publication of figures demonstrating a rise in mouth 50 51 cancers, and in November 2013 following mouth cancer awareness month (16/265). 52 53 Figure 1 here 54 55 56 57 58 59 60 6 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 7 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Qualitative analysis 4 5 Headlines 6 7 8 About one third (35/112) of the headlines mentioned oral sex (e.g. ‘Oral sex can lead to mouth 9 10 cancer’) and Michael Douglas was mentioned in a quarter (n=28) of the headlines (e.g. ‘Michael 11 12 Douglas says cunnilingus gives you cancer but is he right?’). ‘Throat cancer’ was the most frequently 13 14 used term for the disease, mostly reflecting the terminology used by Douglas himself, with ‘mouth 15 For peer review only 16 cancer’ and ‘oral cancer’ also used. Some headlines (33/112) emphasised the risk of oral sex and 17 HPV, and some used the words ‘risk’, ‘alert’ and ‘dangers’ when referring to the link between HPV 18 19 and oral cancer: 20 21 22 ‘Your life: Oral Sex cancer risk’ (Daily Mirror, 28 March 2010) 23 24 25 ‘Early alert for throat cancer’ (The Times, 22 July 2013) 26 27 ‘Stay alive to the dangers of mouth cancer’ (Kidderminster Shuttle, 6 November 2010) 28 29 30 Others emphasised the sexual nature of the link using terms like ‘sex virus’, ‘will oral sex ever feel 31 32 safe again’ and ‘struck a blow for oral sex’. 33

34 http://bmjopen.bmj.com/ Article content 35 36 37 Four main themes emerged from the content analysis of the reviewed articles: Michael Douglas’ 38 39 disclosure, the riskiness of oral sex, health information communicated about HPV, including HPV as a 40 41 cause of oral cancer and its incidence, and the need to vaccinate boys against HPV.

42 on September 24, 2021 by guest. Protected copyright. 43 Michael Douglas’ disclosure 44 45 46 In June 2013, Michael Douglas revealed that HPV was responsible for his throat cancer and that it 47 48 was transmitted through oral sex. This disclosure was more commonly reported in broadsheet 49 50 newspapers. There was a peak in the number of articles covering this link (34/112) in June 2013, 51 52 including those which reported on Michael Douglas’ subsequent assertion that he was talking about 53 54 causes of oral cancer more generally, rather than being specific to him (Table 1, Q1). 55 56 57 58 59 60 7 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 8 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Table 1: Quotes from newspaper articles under themes Michael Douglas' disclosure and 4 Riskiness of oral sex 5 6 Quote (Q) Quotes Themes Newspaper 7 number information 8 1 ‘Michael Douglas did not say cunnilingus Michael Douglas' MailOnline, was the cause of his cancer. It was disclosure 9 4 June 2013 10 discussed that oral sex is a suspected cause of certain oral cancers...but he did 11 not say it was the specific cause of his 12 personal cancer’ 13 14 2 ‘Even with statements from his publicist Michael Douglas' The Telegraph, denying he had put the blame on oral disclosure 15 For peer review only 4 June 2013 16 sex specifically, this genie is not going 17 back in the bottle. And perhaps that's a good thing’ 18 19 3 ‘The actor appeared to suggest Michael Douglas' Belfast Telegraph, Catherine ZetaJones could have given disclosure 20 7 June 2013 21 him the sexually transmitted disease in a 22 candid interview published last week.’ 23 4 ‘She could contract several forms of Michael Douglas' Sunday Express, 24 cancer, including cervical, if she disclosure 12 September 2010 25 contracts HPV.’ 26 27 5 ‘Oral sex can lead to mouth cancer, Riskiness of oral sex Birmingham Post, 28 according to new research.’ 29 26 February 2004 30 6 ‘Without wanting to get too specific, this Riskiness of oral sex The Times, 31 particular cancer is caused by HPV, 5 June 2013 32 which actually comes about from 33 cunnilingus...But yeah, it's a sexually

34 transmitted disease that causes cancer. http://bmjopen.bmj.com/ 35 And if you have it, cunnilingus is also the 36 best cure for it.’ 37 7 ‘A US study showed about 10 per cent of Riskiness of oral sex London Evening 38 men aged 14 to 69 have an oral HPV Standard, 39 infection, compared with 3.6 per cent of 4 June 2013 40 women. Because HPVrelated oral 41 cancer is twice as common in men as in women, cunnilingus is considered riskier 42 on September 24, 2021 by guest. Protected copyright. 43 than fellatio.’ 44 8 ‘What is most strongly linked to oral HPV Riskiness of oral sex The Guardian, 45 infection is the number of sexual 21 February 2011 46 partners someone has had in their 47 lifetimes, in particular the number of 48 individuals on whom they have 49 performed oral sex.’ 50 51 52 There were suggestions in some of the articles that Michael Douglas had raised awareness of the link 53 54 between HPV and oral cancer and had ‘broken the last taboo for men’ by raising the topic of oral sex 55 56 (Table 1, Q2). 57 58 59 60 8 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 9 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 There was also scepticism by one newspaper (MailOnline) about the motives behind Michael 4 5 Douglas’ disclosure, suggesting that he was ‘being paid by drug companies to boost HPV vaccine 6 7 sales’ or that he is trying to cover up smoking as the cause of his throat cancer. 8 9 Focus was also given to Catherine ZetaJones (Michael Douglas’ wife) suggesting Michael Douglas 10 11 had contracted HPV from her (Table 1, Q3). 12 13 14 One newspaper also suggested that Michael Douglas was criticised for his public honesty ‘Namely, 15 For peer review only 16 because it may embarrass his wife, Catherine ZetaJones’ (MailOnline, 3 June 2013). Concern was 17 also expressed that his wife could be at risk of cervical cancer (Table 1, Q4). 18 19 20 Riskiness of oral sex 21 22 23 A large number (84/112) of the articles mentioned oral sex as a cause of mouth cancer (Table 1, Q5). 24 25 HPV was mentioned as being transmitted through oral sex, with articles quoting Michael Douglas 26 27 including the term ‘cunnilingus’ and stating that HPV is a sexually transmitted disease (Table 1, Q6). 28 29 30 This disclosure from Michael Douglas led some articles to discuss the risk of different sexual 31 32 behaviours e.g. ‘is cunnilingus inherently riskier than fellatio?’ (The Guardian, 2 June 2013) with a 33

34 number of these providing research findings (Table 1, Q7). http://bmjopen.bmj.com/ 35 36 Some articles (14/112) expressed the belief that the rise in throat cancer was due to changes in 37 38 sexual practice: ‘the rise in HPVrelated throat cancer is being seen as the legacy of the sexual 39 40 revolution that began in the 1960s’ (The Independent, 21 January 2012), with an increase in oral sex 41

42 practices leading to increases in oral HPV and therefore throat cancer (Table 1, Q8). on September 24, 2021 by guest. Protected copyright. 43 44 The link between oral sex and mouth cancer was not as clear cut, according to Cancer Research UK 45 46 quoted to have said ‘it was unclear if it was linked with oral sex’ (The Independent, 16 March 2012). A 47 48 few of the articles suggested that HPV transmitted through oral sex ‘could overtake tobacco and 49 50 alcohol as the main risk factor in the next decade’. 51 52 53 It was also acknowledged that ‘oral sex is a topic which could not have been discussed openly even 54 55 recently’ (The Telegraph, 4 June 2013). 56 57 58 59 60 9 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 10 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 One article asked ‘should oral sex be off the agenda’, with other articles terming oral sex as ‘now 4 5 officially lifethreatening’ and that HPV is a ‘devastating virus’. 6 7 Health information 8 9 10 Most of the articles providing health information focused on the link between HPV and oral cancer. 11 12 Table 2 shows what health information was presented in each type of publication. The different types 13 14 of information are discussed below. 15 For peer review only 16 Table 2: Health themes mentioned in articles across the publication types 17 18 19 Number of articles including each theme 20 All 21 Broadsheet Middle-market Tabloid Health information theme publications 22 (n=61) (n=19) (n=32) (n=112) 23 24 Link oral cancer and HPV 112 (100%) 61 (100%) 19 (100%) 32 (100%) 25 26 Incidence of oral cancer 61 (54%) 29 (48%) 10 (53%) 22 (69%) 27 28 Information about HPV 29 30 Cause of cervical cancer 63 (56%) 33 (54%) 10 (53%) 20 (63%) 31 32 100 variants of HPV 11 (10%) 5 (8%) 3 (16%) 3 (9%) 33 34 8/10 will contract HPV 12 (11%) 5 (8%) 3 (16%) 4 (13%) http://bmjopen.bmj.com/ 35 36 90% will contract HPV by age 25 6 (5%) 6 (10%) 0 0 37 38 Better prognosis and survival 18 (16%) 4 (7%) 9 (47%) 5 (16%) 39 40 Diagnosis and treatment 29 (26%) 10 (16%) 9 (47%) 10 (32%) 41

42 on September 24, 2021 by guest. Protected copyright. Symptoms and screening 36 (32%) 15 (25%) 8 (42%) 13 (41%) 43 44 45 46 HPV causes oral cancer: As mentioning the link between HPV and oral cancer was an inclusion 47 48 criteria, all articles included this, with the majority (88/112) of the articles mentioned the link between 49 50 HPV and oral cancer within the first 100 words. The terms used were inconsistent, with mouth cancer, 51 oral cancer and throat cancer used interchangeably. Some articles were more specific about the type 52 53 of cancer caused (Table 3, Q9). 54 55 56 57 58 59 60 10 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 11 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Table 3: Quotes from newspaper articles under theme Health Information 4 5 Quote Quotes Themes Newspaper 6 (Q) information 7 number 8 9 ‘These striking results provide some Health information: The Times, evidence that HPV16 infection may be a HPV causes oral 9 26 July 2013 significant cause of oropharyngeal cancer 10 cancer.’ 11 12 10 ‘In Britain, the number of mouth and Health information: MailOnline, throat cancers have increased by 40 per The incidence of oral 13 3 June 2013 14 cent in just a decade’ cancer 15 11 ‘JustFor a few strains peer cause problems, review but Health information: only MailOnline, 16 one in particular, HPV16, is known to Information about 16 March 2012 17 cause cell changes which could develop HPV 18 into cancer.’ 19 12 ‘HPV is really, really common to the Health information: The Guardian, 20 point that if you're a sexually active adult, The high prevalence 2 June 2013 21 you've probably had it. By the age of 25, of HPV 22 90% of sexually active people will have 23 been exposed to some form of genital 24 HPV’ 25 13 ‘Increased recovery rates among this kind Health information: The Guardian, 26 of cancer sufferer. This would help Better prognosis and 2 June 2013 27 explain why Douglas was given an 80% survival 28 chance of survival, despite the advanced 29 stage of his illness.’ 30 14 ‘Treatments such as chemotherapy, Health information: MailOnline, 31 radiotherapy and surgery are often more Better prognosis and 16 July 2013 32 successful in mouth and throat cancers survival 33 caused by the virus than those caused by 34 tobacco and alcohol.’ http://bmjopen.bmj.com/ 35 36 15 ‘Mouth cancer survival rates of about 50% Health information: Daily Mirror, haven't changed in decades, but if the Diagnosis and 37 28 February 2014 disease is caught early patients can have treatment 38 a 90% chance of a cure.’ 39 40 16 ‘Given that subgroups of people with Health information: The Western Mail, HPVrelated H&N [head and neck] Diagnosis and 41 25 February 2013 cancers display excellent survival, these treatment

42 on September 24, 2021 by guest. Protected copyright. patients may in future be offered less 43 aggressive treatment...’ 44 45 17 ‘If you have an ulcer that doesn't heal Health information: Daily Mirror, after three weeks, see your dentist or Symptoms 46 28 March 2008 47 doctor.’ 48 18 ‘Men are advised to check their neck for Health information: MailOnline, 49 lumps when shaving and both sexes to Symptoms 13 November 2013 50 look at the back of their throat while 51 brushing their teeth’ 52

53 54 The incidence of oral cancer: 61/112 articles reported on the incidence of oral cancer, with 57/112 55 56 reporting that the number of cases was increasing. One newspaper quoted a Cancer Research UK 57 58 59 60 11 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 12 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 expert as describing ‘an emerging epidemic’ [in oral cancer] and 5/112 quoted Cancer Research UK 4 5 as linking the HPV virus to the ‘rapid rise’ [in oral cancer cases] (Table 3, Q10). 6 7 A change in the demographic characteristics of those being diagnosed with oral cancer was also 8 9 mentioned in a number of the articles (49/112), emphasising that patients are increasingly younger, 10 11 male, nonsmokers and from professional backgrounds. A few (9/112) articles also suggested that 12 13 there was a shift towards more women getting oral cancer. 14 15 For peer review only 16 Information about HPV: Over half of the articles also mentioned HPV as a cause of cervical cancer 17 (64/112) and presented information about there being ‘more than 100 variants’ of HPV. 19/112 18 19 articles highlighted that not all types of HPV cause cancer (Table 3, Q11). 20 21 22 The high prevalence of HPV: In 30/112 articles it was mentioned that most people will be infected with 23 24 HPV at some point (Table 3, Q12). 25 26 A total of 16/112 articles expressed the need for increased awareness of the link between HPV and 27 28 oral cancer, for example ‘few people can recognise its symptoms’. Nigel Carter, Chief Executive of the 29 30 British Dental Health Foundation was quoted as saying, ‘there is a clear gap in public knowledge 31 32 about what causes mouth cancer’ (Daily Mirror, 28 February 2014). 33

34 http://bmjopen.bmj.com/ 35 Better prognosis and survival: The positive prognosis and survival rates of HPVrelated oral cancer 36 37 were discussed (18/112), sometimes in the context of Michael Douglas’ own survival (Table 3, Q13). 38 39 Survival was also discussed in comparison to oral cancers without HPV as a cause (Table 3, Q14). 40 41

42 Diagnosis and treatment: Early diagnosis of oral cancer was mentioned as giving a ‘better chance of on September 24, 2021 by guest. Protected copyright. 43 44 successful treatment’ by 14/112 articles (Table 3, Q15). 45 46 Treatment methods, particularly chemotherapy and radiotherapy were mentioned, as well as the 47 48 possibility for less invasive treatment in the future (Table 3, Q16). 49 50 51 Symptoms: Symptoms of oral cancer were reported more frequently in tabloids and middlemarket 52 53 newspapers than in broadsheets (Table 2; Table 3, Q17). 54 55 56 57 58 59 60 12 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 13 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 The importance of dentists was emphasised, explaining that they play a vital role in oral cancer 4 5 diagnosis as well as doctors. Advice was given as a slogan, ‘If in doubt, get checked out’ and ways to 6 7 look for symptoms of oral cancer were suggested (Table 3, Q18). 8 9 Case studies were also included and often illustrated the symptoms of HPVrelated oral cancer, the 10 11 invasive and challenging treatment involved, and the importance of regular dental checkups. 12 13 14 Cited research: Fewer than half (42/112) referred to research findings from peerreviewed journals. 15 For peer review only 16 Research that was cited included studies showing the increase in incidence and burden of HPV 17 related oral cancer, showing evidence for oropharyngeal cancer patients carrying antibodies to the E6 18 19 protein from the HPV16 virus [34] and evidence for number of oral sex partners as a risk factor for 20 21 HPV [7]. 22 23 24 HPV Vaccination for boys 25 26 The link between oral sex and oral cancer was given as a strong reason for boys to be vaccinated 27 28 against HPV. HPV Action, a group campaigning for the vaccination of boys, was mentioned in three 29 30 articles. Many of the articles covering news of campaigns to vaccinate boys spoke of the opportunity 31 32 for the vaccine to reduce the number of oral cancer cases in men, calling for it to be ‘a gender neutral 33

34 vaccination’ (Table 4, Q19). http://bmjopen.bmj.com/ 35 36 37 Arguments were made about the cost effectiveness of introducing the vaccine for boys (5/112) and 38 that ‘the Government could save thousands of lives and hundreds of millions of pounds for the NHS 39 40 by vaccinating boys against a cancercausing virus at a cost of around £20m a year’ (The 41

42 Independent, 2 February 2014). on September 24, 2021 by guest. Protected copyright. 43 44 45 An argument for vaccinating boys against HPV was also made with reference to other countries as 46 47 Professor John Ashton said ‘It makes sense to give teenage boys as well as girls the HPV vaccine, 48 which is already happening in Australia.’ (The Guardian, 19 September 2013). 49 50 51 Men who have sex with men were also acknowledged as an unprotected group in a number of articles 52 53 (7/112; Table 4, Q20). 54 55 56 57 58 59 60 13 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 14 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Table 4: Quotes from newspaper articles under theme HPV Vaccination for boys 4 5 Quote (Q) Quotes Themes Newspaper 6 number information 7 19 ‘Campaigners are calling for boys to have the HPV Vaccination Daily Mirror, jab too in order to stem the "catastrophic rise" for boys 8 28 February 2014 in cancers’ 9

10 11 20 ‘We [Department of Health] recognise that HPV Vaccination The Independent, the current vaccination programme does not for boys 12 2 February 2014 13 offer protection against HPVrelated cancers 14 for gay men’ 15 21 ProfessorFor Maura peer Gillison - ‘The reviewtime has HPV Vaccination only The Independent, 16 come to have a more thorough discussion for boys 21 February 2011 17 about the potential benefits of HPV vaccines 18 in boys When my patients ask whether 19 they should vaccinate their sons [with the 20 HPV vaccine], I say 'certainly'. The vaccine 21 will protect them against genital warts and 22 anal cancer and as a potential byproduct of 23 that it may protect them against oral cancer caused by HPV The time has come to 24 consider offering the HPV vaccine to boys, 25 she said." 26 27 22 Professor Margaret Stanley – ‘it is not ethical, HPV Vaccination MailOnline, fair or socially responsible to have a public for boys 28 3 June 2013 29 health policy that forces men to rely on herd immunity, which won't be reached for 30 decades.’ 31

32 33 It was acknowledged that the HPV vaccination would have to be repositioned, as parents currently

34 http://bmjopen.bmj.com/ 35 know it as ‘the cervical cancer vaccine’. There was also recognition that oral cancer is not the only 36 HPVrelated cancer to affect boys and that the virus is linked to anal and penile cancers. 37 38 39 Experts were quoted as being in favour of HPV vaccination for boys, including Professor Maura 40 41 Gillison, who published evidence of the link between HPV and oral cancer (Table 4, Q21 & 22).

42 on September 24, 2021 by guest. Protected copyright. 43 44 Jamie Rae of The Throat Cancer Foundation and HPV Action, expressed the view that not 45 46 vaccinating boys is ‘inequitable in fact, I'd say it's an infringement of human rights, for all boys’ and it 47 is ‘a flawed and discriminatory policy’, in the campaign to vaccinate boys against HPV. 48 49 50 51 52 53 DISCUSSION 54 55 This study is the first to analyse print and online newspaper coverage of the link between HPV and 56 57 oral cancer in the UK. Coverage of the link between HPV and oral cancer has increased in response 58 59 60 14 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 15 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 to major news stories. Articles reporting the link between HPV and oral cancer increased in March 4 5 2012 as figures showed oral cancer cases to be rising. Michael Douglas’ disclosure in June 2013 6 7 sparked an increase in media interest as well as discussions about vaccinating boys. The main 8 themes found to be reported in UK publications were Michael Douglas’ disclosure, the riskiness of 9 10 oral sex, health information including HPV as a cause of oral cancer and its incidence, and the need 11 12 to vaccinate boys against HPV. 13 14 15 All the articlesFor tended to report peer similar content review and the themes remained only consistent across the types 16 17 of publication (e.g. broadsheet or tabloid), but how this was presented did differ across publication 18 type. Broadsheets were the first type of publication to report on the link in October 2001, followed by 19 20 tabloids in February 2004 and middle market in November 2009. Results from research were reported 21 22 in fewer than half of the articles. Basic facts about HPV were not reported in all articles, indicating that 23 24 the public does not always receive even basic information which could help relieve any anxieties. 25 26 27 Articles focusing on Michael Douglas’ disclosure were more likely to appear in broadsheets than the 28 29 other types of publication, which is probably due to the interview being conducted with a Guardian 30 reporter. Previous research has suggested that events such as a celebrity cancer diagnosis can 31 32 create news coverage substantial enough to influence health behaviours such as attending cancer 33

34 screening [14,35]. Oral sex was said to be the cause of Michael Douglas’ cancer in articles talking http://bmjopen.bmj.com/ 35 36 about his disclosure, but there were not many articles addressing what HPV is and the risk factors 37 38 associated with it. There was a missed opportunity to educate the public as many articles did not 39 40 discuss the signs and symptoms of oral cancer and what individuals should do if they find a symptom. 41 Tabloid and middlemarket newspapers covered these more often than broadsheet newspapers, but

42 on September 24, 2021 by guest. Protected copyright. 43 only tabloid newspapers mentioned HPV in their coverage on Mouth Cancer Awareness Month, held 44 45 in November every year. 46 47 48 Many of the references to oral sex related to the transmission of HPV. Some of the articles placed 49 50 emphasis on the risk of oral sex, reporting that those with HPVrelated oral cancer are ‘more likely to 51 52 be connoisseurs of cunnilingus and fellatio’. These comments risk HPVrelated oral cancer being 53 seen as a sign of promiscuity and sensationalise it rather than including facts and presenting an HPV 54 55 infection as common. This, in addition to the information on the rising incidence or HPVrelated oral 56 57 cancer, could lead the public to overestimate the prevalence of HPVrelated oral cancer. In a study 58 59 60 15 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 16 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 with health professionals, normalising HPV by emphasising its high prevalence and association with 4 5 normal sexual behaviour was seen as a key message for patients, to try to minimise any possible 6 7 negative psychological outcomes [36]. This information is also important for the partners of those 8 diagnosed; we found that some articles suggested Michael Douglas could have contracted HPV from 9 10 his wife, Catherine ZetaJones and could suggest that she was to blame. 11 12 13 As Michael Douglas affirmed that he was talking about causes of oral cancer more generally, rather 14 15 than being specificFor to him, thispeer could also cause review stigma towards HPVrelated only oral cancer, as the 16 17 public may feel that he was ashamed to admit his throat cancer was caused by oral sex. There is also 18 the concern that those who have been diagnosed with HPVrelated oral cancer will feel stigmatised, 19 20 so it is important that appropriate messages are being given about HPV to reduce the stigma 21 22 associated with this sexually transmitted infection [37]. Including case studies may help the public 23 24 empathise with the person in the case study and reduce stigma. However, case studies reported in 25 26 the articles were used to illustrate some of the symptoms for HPVrelated oral cancer and how 27 28 invasive and challenging the treatment can be. Endorsements from case studies where symptoms 29 30 were noticed and highlighting good prognosis with early diagnosis may encourage the public to adopt 31 health protective behaviours such as checking for lumps and attending the dentist regularly. 32 33

34 Articles which included reasons for vaccinating boys used case studies, Michael Douglas and http://bmjopen.bmj.com/ 35 36 research to support their campaigns. The media has been shown to increase knowledge of HPV after 37 38 coverage of the introduction of the HPV vaccination [19]. Media coverage of the campaigns and the 39 40 connection to Michael Douglas’ disclosure has the opportunity to raise awareness among parents and 41

42 as all the articles took a positive stance towards vaccinating boys, this may influence parents’ on September 24, 2021 by guest. Protected copyright. 43 44 decisions about vaccinating their sons against HPV. Including endorsements from leading 45 46 researchers in the field of HPV and oral cancer may have enhanced the credibility of messages in the 47 articles and encouraged parents to vaccinate their boys should they have the opportunity. Parents of 48 49 boys will need to be able to communicate to their sons the link between HPV and sex, given that the 50 51 vaccine is currently positioned as the ‘cervical cancer vaccine’. The media could play a role in 52 53 facilitating this. 54 55 56 This study is limited to UK publications and to print and online media, with broadcasts on television 57 not examined and so the results may not be representative of wider information available to the 58 59 60 16 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 17 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 public. Different content may have been presented in television broadcasts which have not been 4 5 picked up in this study. The articles in the study were only examined for content and not for accuracy 6 7 of the information presented as this was not an aim of the study. 8 9 Examining responses to articles presenting the link between HPV and oral cancer through analysis of 10 11 the discourse of online comments made on these articles would be an interesting area for future 12 13 research. Assessing public knowledge about the link between HPV and oral cancer would also be 14 15 useful, and anFor important first peer step towards raisingreview public awareness andonly designing appropriate 16 17 information for patients diagnosed with the disease. 18 19 In conclusion, this study is the first to show that the link between HPV and oral cancer has received 20 21 coverage in the UK media, but often without the provision of detailed information. It is important for 22 23 researchers not only to monitor media coverage of the link, but to work with journalists to ensure the 24 25 content of articles is accurate and appropriate. Transmission of HPV via oral sex was regularly 26 27 discussed, along with the link between HPV and oral cancer, which could raise public anxieties about 28 29 oral sex. 30 31 Contributors 32 33

34 RD, LM and JW conceived of the study and participated in the design. RD participated in the http://bmjopen.bmj.com/ 35 36 acquisition, analysis and interpretation of the data and drafting of the manuscript. AF also participated 37 38 in the analysis and interpretation of the data. All the authors participated in the critical revision of the 39 manuscript and approved the final version. 40 41

42 Funding on September 24, 2021 by guest. Protected copyright. 43 44 45 Rachael Dodd is funded by a Medical Research Council Studentship. 46 47 Competing interests 48 49 50 None 51 52 53 54 55 56 57 58 59 60 17 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 18 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Figure legends 4 5 Figure 1: The number of UK media articles reporting on the link between oral cancer and HPV from 6 7 20012014 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33

34 http://bmjopen.bmj.com/ 35 36 37 38 39 40 41

42 on September 24, 2021 by guest. Protected copyright. 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 18 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 19 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 REFERENCES 4 5 1 Rietbergen MM, Leemans CR, Bloemena E, et al. Increasing prevalence rates of HPV 6 attributable oropharyngeal squamous cell carcinomas in the Netherlands as assessed by a 7 validated test algorithm. Int J Cancer 2013;132:1565–71. doi:10.1002/ijc.27821 8 9 2 Gillison ML, Broutian T, Pickard RKL, et al. Prevalence of oral HPV infection in the United 10 States, 20092010. JAMA 2012;307:693–703. doi:10.1001/jama.2012.101 11 12 3 Mehanna H, Beech T, Nicholson T, et al. Prevalence of human papillomavirus in 13 oropharyngeal and nonoropharyngeal head and neck cancersystematic review and meta 14 analysis of trends by time and region. Head Neck 2013;35:747–55. doi:10.1002/HED 15 For peer review only 16 4 Näsman A, Attner P, Hammarstedt L, et al. Incidence of human papillomavirus (HPV) positive 17 tonsillar carcinoma in Stockholm, Sweden: an epidemic of viralinduced carcinoma? Int J 18 Cancer 2009;125:362–6. doi:10.1002/ijc.24339 19 20 5 De Martel C, Ferlay J, Franceschi S, et al. Global burden of cancers attributable to infections in 21 2008: a review and synthetic analysis. Lancet Oncol 2012;13:607–15. doi:10.1016/S1470 2045(12)701377 22 23 6 Parkin DM, Bray F. Chapter 2: The burden of HPVrelated cancers. Vaccine 2006;24 Suppl 24 3:S3/11–25. doi:10.1016/j.vaccine.2006.05.111 25 26 7 D’Souza G, Kreimer AR, Viscidi R, et al. Casecontrol study of human papillomavirus and 27 oropharyngeal cancer. N Engl J Med 2007;356:1944–56. doi:10.1056/NEJMoa065497 28 29 8 Gillison ML, D’Souza G, Westra W, et al. Distinct risk factor profiles for human papillomavirus 30 type 16positive and human papillomavirus type 16negative head and neck cancers. J Natl 31 Cancer Inst 2008;100:407–20. doi:10.1093/jnci/djn025 32 33 9 D’Souza G, Agrawal Y, Halpern J, et al. Oral sexual behaviors associated with prevalent oral 34 human papillomavirus infection. J Infect Dis 2009;199:1263–9. doi:10.1086/597755 http://bmjopen.bmj.com/ 35 36 10 Blomberg M, Nielsen A, Munk C, et al. Trends in head and neck cancer incidence in Denmark, 37 19782007: focus on human papillomavirus associated sites. Int J Cancer 2011;129:733–41. 38 doi:10.1002/ijc.25699 39 40 11 Passalacqua R, Caminiti C, Salvagni S, et al. Effects of media information on cancer patients’ 41 opinions, feelings, decisionmaking process and physicianpatient communication. Cancer

42 2004;100:1077–84. doi:10.1002/cncr.20050 on September 24, 2021 by guest. Protected copyright. 43 44 12 James C, James N, Davies D, et al. Preferences for different sources of information about 45 cancer. Patient Educ Couns 1999;37:273–82. 46 47 13 Metcalfe D, Price C, Powell J. Media coverage and public reaction to a celebrity cancer 48 diagnosis. J Public Health (Oxf) 2011;33:80–5. doi:10.1093/pubmed/fdq052 49 50 14 Lancucki L, Sasieni P, Patnick J. The impact of Jade Goody’s diagnosis and death on the NHS 51 Cervical Screening Programme. 2012;19:89–93. 52 53 15 Kamenova K, Reshef A, Caulfield T. Angelina Jolie’s faulty gene: newspaper coverage of a 54 celebrity's preventive bilateral mastectomy in Canada, the United States, and the United 55 Kingdom. Genet Med 2014;16:522–8. doi:10.1038/gim.2013.199 56 57 16 Marlow LAV, Waller J, Wardle J. Public awareness that HPV is a risk factor for cervical cancer. 58 Br J Cancer 2007;97:691–4. doi:10.1038/sj.bjc.6603927 59 60 19 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 20 of 22 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 17 Pitts M, Dyson S, Rosenthal D, et al. Knowledge and awareness of human papillomavirus 4 (HPV): attitudes towards HPV vaccination among a representative sample of women in 5 Victoria, Australia. Sex Health 2007;4:177–80. doi:http://dx.doi.org/10.1071/SH07023 6 7 18 Forster A, Wardle J, Stephenson J, et al. Passport to promiscuity or lifesaver: press coverage 8 of HPV vaccination and risky sexual behavior. J Health Commun 2010;15:205–17. 9 doi:10.1080/10810730903528066 10 11 19 Kelly BJ, Leader AE, Mittermaier DJ, et al. The HPV vaccine and the media: how has the topic 12 been covered and what are the effects on knowledge about the virus and cervical cancer? 13 Patient Educ Couns 2009;77:308–13. doi:10.1016/j.pec.2009.03.018 14 15 20 Marlow LAV, Zimet GD, McCaffery KJ, et al. Knowledge of human papillomavirus (HPV) and HPV vaccination:For anpeer international comparison. review Vaccine 2013; 31only:763–9. 16 doi:10.1016/j.vaccine.2012.11.083 17 18 21 Ashe TE, Elter JR, Southerland JH, et al. North Carolina Dental Hygienists ’ Oral. J Cancer 19 Educ 2009;21:151–6. doi:10.1207/s15430154jce2103 20 21 22 Luryi AL, Yarbrough WG, Niccolai LM, et al. Public awareness of head and neck cancers: a 22 crosssectional survey. JAMA Otolaryngol Head Neck Surg 2014;140:639–46. 23 doi:10.1001/jamaoto.2014.867 24 25 23 Brewer NT, Ng TW, McRee AL, et al. Men’s beliefs about HPVrelated disease. J Behav Med 26 2010;33:274–81. doi:10.1007/s1086501092512 27 28 24 Warnakulasuriya KA, Harris CK, Scarrott DM, et al. An alarming lack of public awareness 29 towards oral cancer. Br Dent J 1999;187:319– 30 22.http://www.ncbi.nlm.nih.gov/pubmed/10589135 31 32 25 West R, Alkhatib MN, McNeill a, et al. Awareness of mouth cancer in Great Britain. Br Dent J 33 2006;200:167–9, discussion 151. doi:10.1038/sj.bdj.4813197 34 http://bmjopen.bmj.com/ 35 26 O’Connor T, Papanikolaou V, Keogh I. Public knowledge of head and neck cancer. Ir Med J 36 2010;103:105–7. 37 38 27 Güneri P, Epstein JB. Late stage diagnosis of oral cancer: Components and possible 39 solutions. Oral Oncol 2014;50:1131–6. doi:10.1016/j.oraloncology.2014.09.005 40 41 28 Daley E, DeBate R, Dodd V, et al. Exploring awareness, attitudes, and perceived role among

42 oral health providers regarding HPVrelated oral cancers. J Public Health Dent 2011;71:136– on September 24, 2021 by guest. Protected copyright. 43 42. doi:10.1111/j.17527325.2011.00212.x 44 45 29 Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, 46 Burgess R, eds. Analysing Qualitative Data. London: : Routledge 1994. 173–94. 47 48 30 Johnson JQ, Sionean CS, Scott AM. Exploring the Presentation of News Information About the 49 HPV Vaccine: A Content Analysis of a Representative Sample of U.S. Newspaper Articles. 50 Health Commun 2011;26:491–501.10.1080/10410236.2011.556080 51 52 31 Penta MA, Baban A. Mass media coverage of HPV vaccination in Romania: a content 53 analysis. Health Educ Res 2014;29:977–92.doi:10.1093/her/cyu027 54 55 32 Cohen J. A coefficient of agreement for nominal scales. Educ Psychol Meas 1960;20:37–46. 56 57 33 Landis JR, Koch GG. The measurement of observer agreement for categorical data. 58 Biometrics 1977;33:159–74. doi:10.2307/2529310 59 60 20 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 21 of 22 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 34 Kreimer AR, Johansson M, Waterboer T, et al. Evaluation of human papillomavirus antibodies 4 and risk of subsequent head and neck cancer. J Clin Oncol 2013;31:2708–15. 5 doi:10.1200/JCO.2012.47.2738 6 7 35 Stryker JE, Moriarty CM, Jensen JD. Effects of newspaper coverage on public knowledge 8 about modifiable cancer risks. Health Commun 2008;23:380–90. 9 doi:10.1080/10410230802229894 10 11 36 Dodd RH, Marlow LAV, Waller J. Discussing a diagnosis of human papillomavirus 12 oropharyngeal cancer with patients: An exploratory qualitative study of health professionals. 13 Head Neck 2014;44:1–21. 14 15 37 Braun V, Gavey N. prevention interventions for cervical cancer. Aust N Z J Public Health 1998;22For:353–9. peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33

34 http://bmjopen.bmj.com/ 35 36 37 38 39 40 41

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1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 Figure 1: The number of UK media articles reporting on the link between oral cancer and HPV from 2001- 24 2014 25 340x162mm (300 x 300 DPI) 26 27 28 29 30 31 32 33

34 http://bmjopen.bmj.com/ 35 36 37 38 39 40 41

42 on September 24, 2021 by guest. Protected copyright. 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

PRINT AND ONLINE NEWSPAPER COVERAGE OF THE LINK BETWEEN HPV AND ORAL CANCER IN THE UK: A MIXED METHODS STUDY

For peer review only Journal: BMJ Open

Manuscript ID bmjopen-2015-008740.R1

Article Type: Research

Date Submitted by the Author: 13-Nov-2015

Complete List of Authors: Dodd, Rachael; UCL, Epidemiology and Public Health Marlow, Laura; UCL, Epidemiology and Public Health Forster, Alice; UCL, Epidemiology and Public Health Waller, Jo; UCL, Epidemiology and Public Health

Primary Subject Communication Heading:

Secondary Subject Heading: Health services research, Qualitative research

Keywords: Human Papillomavirus, Oral cancer, Media, United Kingdom

http://bmjopen.bmj.com/

on September 24, 2021 by guest. Protected copyright.

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1 2 3 PRINT AND ONLINE NEWSPAPER COVERAGE OF THE LINK BETWEEN HPV AND ORAL 4 CANCER IN THE UK: A MIXED METHODS STUDY 5

6 7 Rachael H. Dodd MSc, Laura A.V. Marlow PhD, Alice S. Forster, PhD, Jo Waller PhD 8 9 10 Cancer Research UK Health Behaviour Research Centre, Department of Epidemiology & Public 11 Health, UCL, Gower Street, London WC1E 6BT, United Kingdom 12

13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27

28 29 30 31 32 33

34 http://bmjopen.bmj.com/ 35 36 37 38 39 40 Keywords: Human papillomavirus, oral cancer, media, United Kingdom 41

42 on September 24, 2021 by guest. Protected copyright. 43 Word Count: 4484 44 45 46 Corresponding author: 47 R Dodd, Health Behaviour Research Centre 48 Department of Epidemiology and Public Health 49 50 UCL 51 Gower Street 52 London WC1E 6BT, UK 53 54 [email protected] 55 Tel: +44 (0)20 7679 8234 56 57 Fax: +44 (0)20 7679 8354 58 59 60 1 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 2 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 ABSTRACT 4 5 Objectives: The role of human papillomavirus (HPV) in some oral cancers has been reported in the 6 7 news press, though little is known about the content of these articles. This study aimed to examine 8 how frequently the link between HPV and oral cancer has been reported in the news press and to 9 10 examine the content of these articles. 11 12 13 Design: UK media articles were searched for articles relating to oral cancer and HPV in the database 14 15 NexisUK. Of 854For articles identifiedpeer by the initial review search, 112 were eligible only for inclusion (20022014) 16 17 and content analysis was used to determine the main themes discussed. 18 19 Results: Themes included: actor Michael Douglas’ claim that his throat cancer was caused by HPV, 20 21 the riskiness of oral sex, health information (including HPV as a cause of oral cancer) and the need to 22 23 vaccinate boys against HPV. Many articles also referred to the link between HPV and cervical cancer 24 25 and the increasing incidence of HPVrelated oral cancer. The largest peak in articles occurred when 26 27 Michael Douglas discussed his cancer (June 2013). Facts about HPV and references to research 28 29 were provided in some articles. 30 31 Conclusions: The link between HPV and oral cancer and the transmission of HPV via oral sex was 32 33 regularly discussed, yet coverage often lacked detailed health information. This could increase

34 http://bmjopen.bmj.com/ 35 awareness of the link between oral sex and HPV risk, but may also lead to public concern about the 36 37 safety of oral sex. 38 39

40 Article summary 41 Strengths and limitations of this study: 42 on September 24, 2021 by guest. Protected copyright. 43 44 • This is the first study to examine the content of newspaper articles addressing the relationship between 45 HPV and some oral cancers. 46 47 • Using NexisUK to examine UK media coverage of the link between HPV and oral cancer provides a 48 49 systematic analysis of a large number of publications. 50 51 • This study is limited to UK publications and to print and online media, so the results may not be 52 53 representative of wider information available to the public. 54 55 • The articles in the study were only examined for content and not for accuracy of the information 56 57 presented. 58 59 60 2 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 3 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 INTRODUCTION 4 5 Traditional risk factors for oral cancer are tobacco and alcohol, but there is now overwhelming 6 7 evidence that human papillomavirus (HPV) plays a causal role in some types of the disease [1–4]. At 8 9 least 25% of the estimated 85,000 oropharyngeal cancers diagnosed worldwide in 2008 were HPV 10 11 positive [5]. HPV is a common sexually transmitted infection, with high risk types shown to be 12 13 responsible for up to 5% of all cancers worldwide, particularly cervical and other anogenital cancers 14 15 [6]. The main Forrisk factors forpeer transmission of reviewHPV are thought to be aonly greater number of sexual and 16 17 (for oral infection) oral sex partners [7–10] due to greater exposure to the virus. 18 19 Prior to the introduction of the HPV vaccination in 2008, public awareness of HPV (primarily in the 20 21 context of cervical cancer) was measured in populationbased studies to be between 25 and 50% 22 23 [11,12]. The HPV vaccination attracted a lot of media attention [13] and knowledge of HPV appears to 24 25 have increased following its introduction [14]. An online survey across the UK, US and Australia 26 27 following the introduction of HPV vaccine showed 61% reported having heard of HPV [15]. 28 29 In the oral cancer context, no UK studies have yet examined knowledge that HPV is a risk factor for 30 31 oral cancer, but in the US, dental hygienists in North Carolina were found to have low knowledge of 32 33 HPV as a risk factor compared with tobacco and alcohol [16]. In a US populationbased online survey,

34 http://bmjopen.bmj.com/ 35 HPV was recognised as a common risk factor for mouth and throat cancer by less than 1% of 36 37 participants, and even when prompted explicitly about the link, just 13% said they had heard of the 38 39 association [17]. In an internet survey of men, a greater proportion linked HPV with genital warts than 40 with oral cancer, with 43% identifying infection with HPV as a potential cause of oral cancer [18]. 41

42 Public awareness of the signs and risk factors for head and neck cancer has also been shown to be on September 24, 2021 by guest. Protected copyright. 43 44 poor [19–21] and the majority of oral cancers are diagnosed at an advanced stage [22]. Oral health 45 46 providers have expressed concern about appropriate communication regarding HPVrelated oral 47 48 cancer [23]. 49 50 51 As the media has been shown to influence people’s beliefs [24] and is considered a major source of 52 health information for many [25], it is possible that media coverage of the link between HPV and oral 53 54 cancer may influence public awareness and perceptions. The British media is no stranger to reporting 55 56 stories about people in the public eye with cancer, most notably the stories of Jade Goody (an English 57 58 reality television personality), Kylie Minogue (an Australian singer/songwriter) and Angelina Jolie (an 59 60 3 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 4 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 American actress). Metcalfe and colleagues reported that an increased public interest in disease 4 5 prevention can follow a celebrity diagnosis [26]. In the UK, the case of Jade Goody (who died of 6 7 cervical cancer) was associated with an increase in the number of women attending cervical 8 screening [27]. In 2013, American actor Michael Douglas disclosed in an interview with The Guardian 9 10 newspaper that his throat cancer was ‘caused by HPV which actually comes about from cunnilingus’. 11 12 This disclosure received global attention, giving the media an opportunity to discuss the link between 13 14 HPV and oral cancer. However, media reports are sometimes criticised for the lack of detail they 15 For peer review only 16 provide, for example with the announcement of Angelina Jolie’s double mastectomy many failed to 17 18 give information about the rarity of her condition [28]. Media priming may be used to strengthen the 19 20 association between a person's existing beliefs and their subsequent behaviour by making these 21 beliefs more accessible [29]. Mass media campaigns for cancers such as breast and lung (e.g. the 22 23 Cancer Research UK Be Clear on Cancer campaign) have been shown to be effective in increasing 24 25 awareness of key symptoms for these cancers and increasing GP attendance [30]. As this shows, 26 27 media coverage is one route through which public understanding of health issues might be improved, 28 29 but little is known about British media coverage of the link between HPV and oral cancer. The media 30 31 has been shown to be a common source of information about HPV [12] and greatly influences public 32 opinion, and as such it is crucial to examine how the link is portrayed by the British media. As the 33 34 media may play an important role in fulfilling the information needs of the public, examining the http://bmjopen.bmj.com/ 35 36 content of articles will establish what information is being conveyed and how this is communicated. 37 38 This study aimed to examine how frequently the link between HPV and oral cancer has been reported 39 40 in the news press and whether this has changed over time. The study also aimed to examine the 41 content of the articles, in particular looking at the main topics reported and how the link between HPV 42 on September 24, 2021 by guest. Protected copyright. 43 44 and oral cancer has been presented. 45 46 METHOD 47 48 49 The NexisUK database was used to search for print and online articles in the UK relating to HPV and 50 51 oral cancer. NexisUK is an online database providing full text access to international, national and

52 th 53 regional news sources, and is updated daily. The search was conducted on the 20 August 2014 with 54 no date limits applied. The search terms ‘oral cancer’, ‘mouth cancer’, ‘throat cancer’, ‘oropharyngeal 55 56 cancer’, ‘head and neck cancer’ were entered into the database separately, limited to major mentions 57 58 59 60 4 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 5 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 (in the headline, lead paragraph or indexing) and combined with [HPV OR human papillomavirus] 4 5 within UK publications. Newswire and nonbusiness news publications (e.g. obituaries, sports) were 6 7 not searched. The full text of each publication was reviewed by RD. Newspaper articles were 8 categorised using Newsworks [31] as “broadsheet” newspapers (more intellectual in content e.g. The 9 10 Guardian, The Times), “middle market” newspapers (coverage of entertainment and important news 11 12 stories e.g. Sunday Express, London Evening Standard) and “tabloid newspapers” (reporting mostly 13 14 on sensational material e.g. The Sun, Kidderminster Shuttle). Regional newspapers were categorised 15 For peer review only 16 by discussion. 17 18 Quantitative Analysis - Frequency of articles 19 20 The frequency of reporting of the link between HPV and oral cancer was analysed using a frequency 21 22 count. The number of articles per month reporting the link was plotted from the first publication to the 23 24 most recent publication. 25 26 27 Qualitative Analysis - Content of the articles 28 29 The headlines of all articles were analysed descriptively. The content of eligible articles was analysed 30 31 using Framework Analysis [32]. RD first familiarised herself with the content by reading through all the 32 33 eligible articles, making notes of recurring themes and summarising each article. Using the qualitative

34 http://bmjopen.bmj.com/ 35 package NVivo 10, a list of codes was generated from the data and these codes were applied to the 36 37 data. The data were summarised and organised into a matrix of main themes and subthemes, with 38 39 each row representing an article and each column representing a theme/subtheme.. AF coded 20% 40 of the articles to test interrater reliability. Second coding of 20% of the articles has been considered 41

42 sufficient in similar studies [33,34]. Cohen’s Kappa across all themes was 0.71 representing a on September 24, 2021 by guest. Protected copyright. 43 44 substantial agreement [35,36]. Table 1 shows Cohen's Kappa for each main theme and subtheme. 45 46 Any disagreements were resolved by discussion and the remaining articles were coded by RD alone. 47 48 Quotes representative of the themes are reported, along with the publication title, date published and 49 50 quotation number (Table 2). 51 52 RESULTS 53 54 Article characteristics 55 56 57 58 59 60 5 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 6 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 A total of 854 UK articles were identified. Articles were excluded if they were i) duplicates (articles 4 5 published around the same time, with the same number of words in the same publication and 6 7 duplicating text) (n=477); ii) were published in a specialist magazine or publication (n=80); or iii) did 8 not mention the link between oral cancer and HPV (n=32). Following these exclusions, 265 articles 9 10 were eligible for inclusion in the quantitative analysis. An additional 153 articles were excluded from 11 12 the qualitative analysis because they included fewer than 100 words about the link between oral 13 14 cancer and HPV. These articles tended to include a sentence about the link between HPV and oral 15 For peer review only 16 cancer as part of a story with a different focus; they did not have sufficient text to merit qualitative 17 18 analysis. Overall 112 articles were suitable for the qualitative analysis. 19 20 The newspapers with the greatest number of articles eligible for qualitative analysis were The Times 21 22 (n=16), MailOnline (n=10), The Guardian (n=8) and The Independent (n=9). Broadsheet newspapers 23 24 accounted for 54% of the articles, 21% were from middlemarket newspapers and 25% were from 25 26 tabloid newspapers. With regards to average length, broadsheet articles tended to be longer (530 27 28 words average), followed by those in middle market newspapers (472 words average), with tabloid 29 30 newspapers having the shortest (458 words average) articles. A fairly small proportion of articles 31 (18/112; 16%) articles were published in regional papers. 32 33

34 Quantitative analysis - Frequency of articles http://bmjopen.bmj.com/ 35 36 37 No UK publications reported the link between HPV and oral cancer prior to 2001. Figure 1 shows the 38 39 frequency of articles published per month mentioning the link between HPV and oral cancer. There 40 was a steady number of articles reporting on the link, but for most years, on average, fewer than two 41

42 articles were published per month across the newspapers. The largest number of articles reporting on on September 24, 2021 by guest. Protected copyright. 43 44 the link between HPV and oral cancer was seen in 2013 (112/265). Broadsheet newspapers first 45 46 reported that there was a link between HPV and oral cancer in October 2001, followed by tabloid 47 48 newspapers in February 2004 and middle market newspapers in November 2009. 49 50 51 There was a noticeable peak in June 2013 (45/265) with 34/45 of these discussing Michael Douglas' 52 throat cancer being caused by HPV. There were a few small peaks in articles published in May 2007 53 54 (6/265), with 5/6 discussing a research paper which further demonstrated the link between oral sex 55 56 and throat cancer [7], in March 2012 (7/265) reflecting the publication of figures demonstrating a rise 57 58 59 60 6 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 7 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 in mouth cancers, and in November 2013 (16/265) with 10/16 articles reflecting on mouth cancer 4 5 awareness month. 6 7 Figure 1 here 8 9 10 Qualitative analysis - Content of the articles 11 12 Headlines 13 14 15 About one thirdFor (35/112; 31%) peer of the headlines review mentioned oral sex (e.g.only ‘Oral sex can lead to mouth 16 cancer’) and Michael Douglas was mentioned in a quarter (n=28/112; 25%) of the headlines (e.g. 17 18 ‘Michael Douglas says cunnilingus gives you cancer but is he right?’). ‘Throat cancer’ was the most 19 20 frequently used term for the disease, mostly reflecting the terminology used by Douglas himself, with 21 22 ‘mouth cancer’ and ‘oral cancer’ also used. Some headlines (33/112; 29%) emphasised the risk of 23 24 oral sex and cancer (e.g. 'Mouth cancer rise in young people is linked to oral sex' The Metro, March 25 26 2012), and some used the words ‘risk’, ‘alert’ and ‘dangers’ when referring to the link between HPV 27 28 and oral cancer: 29 30 ‘Your life: Oral Sex cancer risk’ (Daily Mirror, 28 March 2010) 31 32 33 ‘Early alert for throat cancer’ (The Times, 22 July 2013)

34 http://bmjopen.bmj.com/ 35 ‘Stay alive to the dangers of mouth cancer’ (Kidderminster Shuttle, 6 November 2010) 36 37 38 Others emphasised the sexual nature of the link using terms like ‘sex virus’, ‘will oral sex ever feel 39 40 safe again’ and ‘struck a blow for oral sex’. 41

42 on September 24, 2021 by guest. Protected copyright. 43 Article content 44 45 Four main themes emerged from the content analysis of the reviewed articles: Michael Douglas’ 46 47 disclosure, the riskiness of oral sex, health information communicated about HPV, including HPV as a 48 49 cause of oral cancer and its incidence, and the need to vaccinate boys against HPV. 50 51 52 Michael Douglas’ disclosure 53 54 In June 2013, Michael Douglas revealed that HPV was responsible for his throat cancer and that it 55 56 was transmitted through oral sex. This disclosure was more commonly reported in broadsheet 57 58 newspapers. There was a peak in the number of articles covering this link (34/112; 30%) in June 59 60 7 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 8 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 2013, including those which reported on Michael Douglas’ subsequent assertion that he was talking 4 5 about causes of oral cancer more generally, rather than being specific to him (MailOnline, 4 June 6 7 2013, Q1). 8 9 Table 1: Main themes and sub-themes with inter-rater reliability 10 11 Theme (Cohen's Kappa) Description of theme 12 13 Michael Douglas' Disclosure (0.67) The disclosure from Michael 14 Douglas that his throat 15 For peer review onlycancer was caused by HPV 16 17 Health Information (0.70) Represents information 18 communicated about HPV a. HPV as cause of oral cancer (0.73) 19 and oral cancer related to b. Incidence of oral cancer (0.61) 20 health. The subthemes c. Information about HPV (0.62) represent specific health 21 1. Cause of cervical cancer information given about HPV 22 2. How common HPV is and oral cancer 23 3. Number of different types of 24 HPV 25 4. Demographic changes 26 d. Better prognosis and survival (0.79) 27 e. Diagnosis and treatment for oral (0.77) 28 cancer 29 f. Symptoms and screening for oral (0.56) 30 cancer 31 g. Cited research evidence (0.69) 32 Riskiness Of Oral Sex (0.77) Represents information 33 communicated about the 34 recognition of oral sex in the http://bmjopen.bmj.com/ 35 cause of oral cancer and 36 how changes in sexual 37 practice are thought to 38 account for this 39 40 Vaccination Of Boys (0.85) Represents the calls for boys 41 to be vaccinated in light of

42 the evidence that HPV on September 24, 2021 by guest. Protected copyright. 43 doesn't only cause oral 44 cancer, but other cancers as 45 well 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 8 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 9 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Table 2: Quotes from themes and sub-themes 4 5 Quote (Q) Quotes Themes Newspaper 6 number information 7 1 ‘Michael Douglas did not say cunnilingus Michael Douglas' MailOnline, was the cause of his cancer. It was disclosure 8 4 June 2013 discussed that oral sex is a suspected 9 cause of certain oral cancers...but he did 10 not say it was the specific cause of his 11 personal cancer’ 12 13 2 ‘Even with statements from his publicist Michael Douglas' The Telegraph, denying he had put the blame on oral disclosure 14 4 June 2013 sex specifically, this genie is not going 15 Forback in the bottle.peer And perhaps review that's a only 16 good thing’ 17 18 3 ‘Oral sex can lead to mouth cancer, Riskiness of oral sex Birmingham Post, according to new research.’ 19 26 February 2004 20 4 ‘Without wanting to get too specific, this Riskiness of oral sex The Times, 21 particular cancer is caused by HPV, 5 June 2013 22 which actually comes about from 23 cunnilingus...But yeah, it's a sexually 24 transmitted disease that causes cancer. 25 And if you have it, cunnilingus is also the 26 best cure for it.’ 27 5 ‘A US study showed about 10 per cent of Riskiness of oral sex London Evening 28 men aged 14 to 69 have an oral HPV Standard, 29 infection, compared with 3.6 per cent of 4 June 2013 30 women. Because HPVrelated oral 31 cancer is twice as common in men as in 32 women, cunnilingus is considered riskier 33 than fellatio.’

34 http://bmjopen.bmj.com/ 6 ‘What is most strongly linked to oral HPV Riskiness of oral sex The Guardian, 35 infection is the number of sexual 21 February 2011 36 partners someone has had in their 37 lifetimes, in particular the number of 38 individuals on whom they have 39 performed oral sex.’ 40 7 ‘These striking results provide some Health information: HPV The Times, 41 evidence that HPV16 infection may be a causes oral cancer

26 July 2013 on September 24, 2021 by guest. Protected copyright. 42 significant cause of oropharyngeal 43 cancer.’ 44 45 8 ‘In Britain, the number of mouth and Health information: The MailOnline, throat cancers have increased by 40 per incidence of oral cancer 46 3 June 2013 47 cent in just a decade’ 48 9 ‘Just a few strains cause problems, but Health information: MailOnline, 49 one in particular, HPV16, is known to Information about HPV 16 March 2012 50 cause cell changes which could develop 51 into cancer.’ 52 10 ‘HPV is really, really common to the Health information: The The Guardian, 53 point that if you're a sexually active adult, high prevalence of HPV 2 June 2013 54 you've probably had it. By the age of 25, 55 90% of sexually active people will have 56 been exposed to some form of genital 57 HPV’ 58 59 60 9 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 10 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 11 ‘Increased recovery rates among this Health information: Better The Guardian, kind of cancer sufferer. This would help prognosis and survival 4 2 June 2013 5 explain why Douglas was given an 80% 6 chance of survival, despite the advanced 7 stage of his illness.’ 8 12 ‘Treatments such as chemotherapy, Health information: Better MailOnline, 9 radiotherapy and surgery are often more prognosis and survival 16 July 2013 10 successful in mouth and throat cancers 11 caused by the virus than those caused 12 by tobacco and alcohol.’ 13 13 ‘Mouth cancer survival rates of about Health information: Daily Mirror, 14 50% haven't changed in decades, but if Diagnosis and treatment 28 February 2014 15 Forthe disease ispeer caught early patients review can only 16 have a 90% chance of a cure.’ 17 14 ‘Given that subgroups of people with Health information: The Western Mail, 18 HPVrelated H&N [head and neck] Diagnosis and treatment 25 February 2013 19 cancers display excellent survival, these 20 patients may in future be offered less 21 aggressive treatment...’ 22 15 ‘If you have an ulcer that doesn't heal Health information: Daily Mirror, 23 after three weeks, see your dentist or Symptoms 28 March 2008 24 doctor.’ 25 26 16 ‘Men are advised to check their neck for Health information: MailOnline, lumps when shaving and both sexes to Symptoms 27 13 November 2013 look at the back of their throat while 28 brushing their teeth’ 29 30 17 ‘Campaigners are calling for boys to HPV Vaccination for boys Daily Mirror, have the jab too in order to stem the 31 28 February 2014 32 "catastrophic rise" in cancers’ 33

34 18 ‘We [Department of Health] recognise HPV Vaccination for boys The Independent, http://bmjopen.bmj.com/ 35 that the current vaccination programme 2 February 2014 36 does not offer protection against HPV 37 related cancers for gay men’ 38 19 Professor Maura Gillison - ‘The time has HPV Vaccination for boys The Independent, 39 come to have a more thorough 21 February 2011 40 discussion about the potential benefits of 41 HPV vaccines in boys When my

42 patients ask whether they should on September 24, 2021 by guest. Protected copyright. 43 vaccinate their sons [with the HPV 44 vaccine], I say 'certainly'. The vaccine 45 will protect them against genital warts 46 and anal cancer and as a potential by 47 product of that it may protect them 48 against oral cancer caused by HPV 49 The time has come to consider offering the HPV vaccine to boys, she said." 50 51 20 Professor Margaret Stanley – ‘it is not HPV Vaccination for boys MailOnline, ethical, fair or socially responsible to 52 3 June 2013 53 have a publichealth policy that forces 54 men to rely on herd immunity, which 55 won't be reached for decades.’ 56 57 58 59 60 10 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 11 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 There were suggestions in some of the articles that Michael Douglas had raised awareness of the link 4 5 between HPV and oral cancer and had ‘broken the last taboo for men’ by raising the topic of oral sex 6 7 (The Telegraph, 4 June 2013, Q2). 8 9 Riskiness of oral sex 10 11 12 A large number (83/112; 74%) of the articles mentioned oral sex as a cause of mouth cancer 13 14 (Birmingham Post, 26 February 2004, Q3). 15 For peer review only 16 HPV was mentioned as being transmitted through oral sex, with articles quoting Michael Douglas 17 18 including the term ‘cunnilingus’ and stating that HPV is a sexually transmitted disease (The Times, 5 19 20 June 2013, Q4). 21 22 23 This disclosure from Michael Douglas led some articles to discuss the risk of different sexual 24 25 behaviours e.g. ‘is cunnilingus inherently riskier than fellatio?’ (The Guardian, 2 June 2013) with a 26 number of these providing research findings (London Evening Standard, 4 June 2013, Q5). 27 28 29 Some articles (14/112; 13%) expressed the belief that the rise in throat cancer was due to changes in 30 31 sexual practice: ‘the rise in HPVrelated throat cancer is being seen as the legacy of the sexual 32 33 revolution that began in the 1960s’ (The Independent, 21 January 2012), with an increase in oral sex

34 http://bmjopen.bmj.com/ 35 practices leading to increases in oral HPV and therefore throat cancer (The Guardian, 21 February 36 37 2011, Q6). 38 39 The link between oral sex and mouth cancer was not as clear cut, according to Cancer Research UK 40 41 quoted to have said ‘it was unclear if it was linked with oral sex’ (The Independent, 16 March 2012). A

42 on September 24, 2021 by guest. Protected copyright. 43 few (5/112; 4%) of the articles suggested that HPV transmitted through oral sex ‘could overtake 44 45 tobacco and alcohol as the main risk factor in the next decade’ (Western Morning News, 23 46 47 November 2010). 48 49 It was also acknowledged that ‘oral sex is a topic which could not have been discussed openly even 50 51 recently’ (The Telegraph, 4 June 2013). 52 53 54 One article asked ‘should oral sex be off the agenda’ (Daily Mirror, 28 February 2014), with other 55 56 articles terming oral sex as ‘now officially lifethreatening’ (The Times, 26 May 2007) and that HPV is 57 a ‘devastating virus’ (The Sun, 13 February 2014). 58 59 60 11 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 12 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Health information 4 5 Most of the articles providing health information focused on the link between HPV and oral cancer. 6 7 Table 3 shows what health information was presented in each type of publication. The different types 8 9 of information are discussed below. 10 11 12 HPV causes oral cancer: As mentioning the link between HPV and oral cancer was an inclusion 13 14 criteria, all articles included this, with the majority (88/112; 79%) of the articles mentioned the link 15 For peer review only 16 between HPV and oral cancer within the first 100 words. The terms used were inconsistent, with 17 mouth cancer, oral cancer and throat cancer used interchangeably. Some articles were more specific 18 19 about the type of cancer caused (The Times, 26 July 2013, Q7). 20 21 22 The incidence of oral cancer: 61/112 (54%) articles reported on the incidence of oral cancer, with 23 24 57/112 (51%) reporting that the number of cases was increasing. One newspaper quoted a Cancer 25 26 Research UK expert as describing ‘an emerging epidemic’ [in oral cancer] and 5/112 (4%) quoted 27 Cancer Research UK as linking the HPV virus to the ‘rapid rise’ [in oral cancer cases] (MailOnline, 3 28 29 June 2013, Q8). 30 31 32 A change in the demographic characteristics of those being diagnosed with oral cancer was also 33

34 mentioned in a number of the articles (49/112; 44%), emphasising that patients are increasingly http://bmjopen.bmj.com/ 35 36 younger, male, nonsmokers and from professional backgrounds. A few (9/112; 8%) articles also 37 38 suggested that there was a shift towards more women getting oral cancer. 39 40 Information about HPV: Over half of the articles also mentioned HPV as a cause of cervical cancer 41

42 (63/112; 56%) and presented information about there being ‘more than 100 variants’ of HPV. 19/112 on September 24, 2021 by guest. Protected copyright. 43 44 (17%) articles highlighted that not all types of HPV cause cancer (MailOnline, 16 March 2012, Q9). 45 46 47 The high prevalence of HPV: In 30/112 (27%) articles it was mentioned that most people will be 48 infected with HPV at some point (The Guardian, 2 June 2013, Q10). 49 50 51 A total of 16/112 (14%) articles expressed the need for increased awareness of the link between HPV 52 53 and oral cancer, for example ‘few people can recognise its symptoms’ (Kidderminster Shuttle, 6 54 55 November 2010). Nigel Carter, Chief Executive of the British Dental Health Foundation was quoted as 56 57

58 59 60 12 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 13 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Table 3: Themes mentioned in articles across the publication types 4 5 Number of articles including each theme 6 All 7 Broadsheet Middle-market Tabloid Theme publications 8 (n=61) (n=23) (n=28) 9 (n=112) 10 Michael Douglas' Disclosure 50 (45%) 25 (41%) 14 (61%) 11 (39%) 11 12 Health information 13 14 Link oral cancer and HPV 112 (100%) 61 (100%) 23 (100%) 28 (100%) 15 For peer review only 16 Incidence of oral cancer 61 (54%) 29 (48%) 13 (57%) 19 (68%) 17 18 Information about HPV 19 20 21 Cause of cervical cancer 63 (56%) 33 (54%) 12 (52%) 18 (64%) 22 23 100 variants of HPV 11 (10%) 5 (8%) 3 (13%) 3 (11%) 24 25 8/10 will contract HPV 12 (11%) 5 (8%) 3 (13%) 4 (14%) 26 27 90% will contract HPV by age 25 6 (5%) 6 (10%) 0 0 28 29 Better prognosis and survival 18 (16%) 4 (7%) 10 (43%) 4 (14%) 30 31 Diagnosis and treatment 29 (26%) 10 (16%) 10 (43%) 9 (32%) 32 33 Symptoms and screening 36 (32%) 15 (25%) 10 (43%) 11 (39%)

34 http://bmjopen.bmj.com/ 35 Riskiness of oral sex 83 (74%) 42 (69%) 20 (87%) 21 (75%) 36 37 Vaccination of boys 40 (36%) 22 (36%) 6 (26%) 12 (43%)

38 39 40 saying, ‘there is a clear gap in public knowledge about what causes mouth cancer’ (Daily Mirror, 28 41

42 February 2014). on September 24, 2021 by guest. Protected copyright. 43 44 45 Better prognosis and survival: The positive prognosis and survival rates of HPVrelated oral cancer 46 47 were discussed (18/112; 16%), sometimes in the context of Michael Douglas’ own survival (The 48 49 Guardian, 2 June 2013, Q11). 50 51 Survival was also discussed in comparison to oral cancers without HPV as a cause (MailOnline, 16 52 53 July 2013, Q12). 54 55 56 Diagnosis and treatment: Early diagnosis of oral cancer was mentioned as giving a ‘better chance of 57 58 successful treatment’ (Daily Mirror, 28 February 2014, Q13) by 14/112 (13%) articles. 59 60 13 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 14 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Treatment methods, particularly chemotherapy and radiotherapy were mentioned, as well as the 4 5 possibility for less invasive treatment in the future (The Western Mail, 25 February 2013, Q14). 6 7 Symptoms: Symptoms of oral cancer were reported more frequently in tabloids and middlemarket 8 9 newspapers than in broadsheets (Daily Mirror, 28 March 2008, Q15). 10 11 12 The importance of dentists was emphasised, explaining that they play a vital role in oral cancer 13 14 diagnosis as well as doctors. Advice was given as a slogan, ‘If in doubt, get checked out’ and ways to 15 For peer review only 16 look for symptoms of oral cancer were suggested (MailOnline, 13 November 2013, Q16). 17 18 Case studies were also included and often illustrated the symptoms of HPVrelated oral cancer, the 19 20 invasive and challenging treatment involved, and the importance of regular dental checkups. 21 22 23 Cited research: Fewer than half (42/112; 38%) referred to research findings from peerreviewed 24 25 journals. Research that was cited included studies showing the increase in incidence and burden of 26 HPVrelated oral cancer, showing evidence for oropharyngeal cancer patients carrying antibodies to 27 28 the E6 protein from the HPV16 virus [37] and evidence for number of oral sex partners as a risk factor 29 30 for HPV [7]. 31 32 33 HPV Vaccination for boys

34 http://bmjopen.bmj.com/ 35 The link between oral sex and oral cancer was given as a strong reason for boys to be vaccinated 36 37 against HPV. HPV Action, a group campaigning for the vaccination of boys, was mentioned in three 38 39 articles. Many of the articles covering news of campaigns to vaccinate boys spoke of the opportunity 40 41 for the vaccine to reduce the number of oral cancer cases in men, calling for it to be ‘a gender neutral

42 on September 24, 2021 by guest. Protected copyright. 43 vaccination’ (Daily Mirror, 28 February 2014, Q17). 44 45 46 Arguments were made about the cost effectiveness of introducing the vaccine for boys (5/112; 4%) 47 and that ‘the Government could save thousands of lives and hundreds of millions of pounds for the 48 49 NHS by vaccinating boys against a cancercausing virus at a cost of around £20m a year’ (The 50 51 Independent, 2 February 2014). 52 53 54 An argument for vaccinating boys against HPV was also made with reference to other countries as 55 56 Professor John Ashton said ‘It makes sense to give teenage boys as well as girls the HPV vaccine, 57 which is already happening in Australia.’ (The Guardian, 19 September 2013). 58 59 60 14 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 15 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Men who have sex with men were also acknowledged as an unprotected group in a number of articles 4 5 (7/112 (6%); The Independent, 2 February 2014, Q18). 6 7 It was acknowledged that the HPV vaccination would have to be repositioned, as parents currently 8 9 know it as ‘the cervical cancer vaccine’. There was also recognition that oral cancer is not the only 10 11 HPVrelated cancer to affect boys and that the virus is linked to anal and penile cancers. 12 13 14 Experts were quoted as being in favour of HPV vaccination for boys, including Professor Maura 15 For peer review only 16 Gillison, who published evidence of the link between HPV and oral cancer (The Independent, 21 17 February 2011, Q19; MailOnline, 3 June 2013, Q20). 18 19 20 Jamie Rae of The Throat Cancer Foundation and HPV Action, expressed the view that not 21 22 vaccinating boys is ‘inequitable in fact, I'd say it's an infringement of human rights, for all boys’ (The 23 24 Independent, 2 February 2014) and it is ‘a flawed and discriminatory policy’ (The Herald (Glasgow), 25 26 12 June 2013), in the campaign to vaccinate boys against HPV. 27 28 DISCUSSION 29 30 31 This study is the first to analyse print and online newspaper coverage of the link between HPV and 32 33 oral cancer in the UK. Coverage of the link between HPV and oral cancer has increased in response

34 http://bmjopen.bmj.com/ 35 to major news stories. Articles reporting the link between HPV and oral cancer increased in March 36 37 2012 as figures showed oral cancer cases to be rising. Michael Douglas’ disclosure in June 2013 38 sparked an increase in media interest as well as discussions about vaccinating boys. The main 39 40 themes found to be reported in UK publications were Michael Douglas’ disclosure, the riskiness of 41

42 oral sex, health information including HPV as a cause of oral cancer and its incidence, and the need on September 24, 2021 by guest. Protected copyright. 43 44 to vaccinate boys against HPV. 45 46 47 All the articles tended to report similar content and the themes remained consistent across the types 48 of publication (e.g. broadsheet or tabloid), but how this was presented did differ across publication 49 50 type. Broadsheets were the first type of publication to report on the link in October 2001, followed by 51 52 tabloids in February 2004 and middle market in November 2009. Results from research were reported 53 54 in fewer than half of the articles. Basic facts about HPV were not reported in all articles, indicating that 55 56 the public does not always receive even basic information which could help relieve any anxieties. 57 58 59 60 15 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 16 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Articles focusing on Michael Douglas’ disclosure were more likely to appear in broadsheets than the 4 5 other types of publication, which is probably due to the interview being conducted with a Guardian 6 7 reporter. Previous research has suggested that events such as a celebrity cancer diagnosis can 8 create news coverage substantial enough to influence health behaviours such as attending cancer 9 10 screening [27,38]. Oral sex was said to be the cause of Michael Douglas’ cancer in articles talking 11 12 about his disclosure, but there were not many articles addressing what HPV is and the risk factors 13 14 associated with it. There was a missed opportunity to educate the public as many articles did not 15 For peer review only 16 discuss the signs and symptoms of oral cancer and what individuals should do if they find a symptom. 17 18 Tabloid and middlemarket newspapers covered these more often than broadsheet newspapers, but 19 20 only tabloid newspapers mentioned HPV in their coverage on Mouth Cancer Awareness Month, held 21 in November every year. As different newspapers appeal to different reader demographics, it is 22 23 important for communication of HPV and oral cancer to be consistent across all newspaper types to 24 25 minimise inequalities in awareness and consequently health outcomes. 26 27 28 Many of the references to oral sex related to the transmission of HPV. Some of the articles placed 29 30 emphasis on the risk of oral sex, reporting that those with HPVrelated oral cancer are ‘more likely to 31 be connoisseurs of cunnilingus and fellatio’. These comments risk HPVrelated oral cancer being 32 33 seen as a sign of promiscuity and sensationalise it rather than including facts and presenting an HPV 34 http://bmjopen.bmj.com/ 35 infection as common. This, in addition to the information on the rising incidence or HPVrelated oral 36 37 cancer, could lead the public to overestimate the prevalence of HPVrelated oral cancer. In a study 38 39 with health professionals, normalising HPV by emphasising its high prevalence and association with 40 41 normal sexual behaviour was seen as a key message for patients, to try to minimise any possible

42 on September 24, 2021 by guest. Protected copyright. 43 negative psychological outcomes [39]. This information is also important for the partners of those 44 diagnosed; we found that some articles suggested Michael Douglas could have contracted HPV from 45 46 his wife, Catherine ZetaJones and could suggest that she was to blame. 47 48 49 As Michael Douglas affirmed that he was talking about causes of oral cancer more generally, rather 50 51 than being specific to him, this could also cause stigma towards HPVrelated oral cancer, as the 52 53 public may feel that he was ashamed to admit his throat cancer was caused by oral sex. There is also 54 the concern that those who have been diagnosed with HPVrelated oral cancer will feel stigmatised, 55 56 so it is important that appropriate messages are being given about HPV to reduce the stigma 57 58 59 60 16 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 17 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 associated with this sexually transmitted infection [40]. Including case studies may help the public 4 5 empathise with the person in the case study and reduce stigma. However, case studies reported in 6 7 the articles were used to illustrate some of the symptoms for HPVrelated oral cancer and how 8 invasive and challenging the treatment can be. Endorsements from case studies where symptoms 9 10 were noticed and highlighting good prognosis with early diagnosis may encourage the public to adopt 11 12 health protective behaviours such as checking for lumps and attending the dentist regularly. 13 14 15 Articles whichFor included reasons peer for vaccinating review boys used case studies, only Michael Douglas and 16 17 research to support their campaigns. The media has been shown to increase knowledge of HPV after 18 19 coverage of the introduction of the HPV vaccination [14]. Media coverage of the campaigns and the 20 21 connection to Michael Douglas’ disclosure has the opportunity to raise awareness among parents and 22 as all the articles took a positive stance towards vaccinating boys, this may influence parents’ 23 24 decisions about vaccinating their sons against HPV. Including endorsements from leading 25 26 researchers in the field of HPV and oral cancer may have enhanced the credibility of messages in the 27 28 articles and encourage parents to vaccinate their boys should they have the opportunity. Parents of 29 30 boys will need to be able to communicate to their sons the link between HPV and sex, given that the 31 32 vaccine is currently positioned as the ‘cervical cancer vaccine’. The media could play a role in 33

34 facilitating this. http://bmjopen.bmj.com/ 35 36 This study is limited to UK publications and to print and online media, with broadcasts on television 37 38 not examined and so the results may not be representative of wider information available to the 39 40 public. Different content may have been presented in television broadcasts which have not been 41

42 picked up in this study. The articles in the study were only examined for content and not for accuracy on September 24, 2021 by guest. Protected copyright. 43 44 of the information presented as this was not an aim of the study. 45 46 Examining responses to articles presenting the link between HPV and oral cancer through analysis of 47 48 the discourse of online comments made on these articles would be an interesting area for future 49 50 research. Coding the frequency that identical stories were reported in different articles may also be 51 52 useful to do in the future to understand which stories gain traction in the media. Assessing public 53 54 knowledge about the link between HPV and oral cancer would also be useful, and an important first 55 56 step towards raising public awareness and designing appropriate information for patients diagnosed 57 with the disease. 58 59 60 17 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 18 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 In conclusion, this study is the first to show that the link between HPV and oral cancer has received 4 5 coverage in the UK media, but an opportunity was missed to educate the public and influence health 6 7 behaviours, through the disclosure of Michael Douglas. It is important for researchers not only to 8 monitor media coverage of the link, but to work with journalists to ensure the content of articles is 9 10 accurate and appropriate. Transmission of HPV via oral sex was regularly discussed along with the 11 12 link between HPV and oral cancer, which could raise public anxieties about oral sex. It is therefore 13 14 important to aim to minimise stigma and blame associated with these messages, normalising HPV 15 For peer review only 16 and portraying it as associated with normal sexual behaviour. 17 18 Contributors 19 20 21 RD, LM and JW conceived of the study and participated in the design. RD participated in the 22 23 acquisition, analysis and interpretation of the data and drafting of the manuscript. AF also participated 24 25 in the analysis and interpretation of the data. All the authors participated in the critical revision of the 26 27 manuscript and approved the final version. 28 29 Funding 30 31 32 RD is funded by a Medical Research Council Studentship. AF is funded by a Cancer Research UK – 33

34 BUPA cancer prevention Fellowship (C49896/A17429). JW and LM are funded by a Cancer Research http://bmjopen.bmj.com/ 35 36 UK Career Development Fellowship awarded to JW (C7492/A17219). 37 38 Competing interests 39 40 41 No, there are no competing interests.

42 on September 24, 2021 by guest. Protected copyright. 43 44 Data sharing 45 46 No additional data are available. 47 48 49 50 51 52 53 54 55 56 57 58 59 60 18 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 19 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Figure legends 4 5 Figure 1: The number of UK media articles reporting on the link between oral cancer and HPV from 6 7 20012014 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33

34 http://bmjopen.bmj.com/ 35 36 37 38 39 40 41

42 on September 24, 2021 by guest. Protected copyright. 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 19 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 20 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 REFERENCES 4 5 1 Rietbergen MM, Leemans CR, Bloemena E, et al. Increasing prevalence rates of HPV 6 attributable oropharyngeal squamous cell carcinomas in the Netherlands as assessed by a 7 validated test algorithm. Int J Cancer 2013;132:1565–71. doi:10.1002/ijc.27821 8 9 2 Gillison ML, Broutian T, Pickard RKL, et al. Prevalence of oral HPV infection in the United 10 States, 20092010. JAMA 2012;307:693–703. doi:10.1001/jama.2012.101 11 12 3 Mehanna H, Beech T, Nicholson T, et al. Prevalence of human papillomavirus in 13 oropharyngeal and nonoropharyngeal head and neck cancersystematic review and meta 14 analysis of trends by time and region. Head Neck 2013;35:747–55. doi:10.1002/HED 15 For peer review only 16 4 Näsman A, Attner P, Hammarstedt L, et al. Incidence of human papillomavirus (HPV) positive 17 tonsillar carcinoma in Stockholm, Sweden: an epidemic of viralinduced carcinoma? Int J 18 Cancer 2009;125:362–6. doi:10.1002/ijc.24339 19 20 5 De Martel C, Ferlay J, Franceschi S, et al. Global burden of cancers attributable to infections in 21 2008: a review and synthetic analysis. Lancet Oncol 2012;13:607–15. doi:10.1016/S1470 22 2045(12)701377 23 24 6 Parkin DM, Bray F. Chapter 2: The burden of HPVrelated cancers. Vaccine 2006;24 Suppl 25 3:S3/11–25. doi:10.1016/j.vaccine.2006.05.111 26 27 7 D’Souza G, Kreimer AR, Viscidi R, et al. Casecontrol study of human papillomavirus and 28 oropharyngeal cancer. N Engl J Med 2007;356:1944–56. doi:10.1056/NEJMoa065497 29 30 8 Gillison ML, D’Souza G, Westra W, et al. Distinct risk factor profiles for human papillomavirus 31 type 16positive and human papillomavirus type 16negative head and neck cancers. J Natl Cancer Inst 2008;100:407–20. doi:10.1093/jnci/djn025 32 33 9 D’Souza G, Agrawal Y, Halpern J, et al. Oral sexual behaviors associated with prevalent oral 34 http://bmjopen.bmj.com/ human papillomavirus infection. J Infect Dis 2009;199:1263–9. doi:10.1086/597755 35 36 10 Blomberg M, Nielsen A, Munk C, et al. Trends in head and neck cancer incidence in Denmark, 37 19782007: focus on human papillomavirus associated sites. Int J Cancer 2011;129:733–41. 38 doi:10.1002/ijc.25699 39 40 11 Marlow LAV, Waller J, Wardle J. Public awareness that HPV is a risk factor for cervical cancer. 41 Br J Cancer 2007;97:691–4. doi:10.1038/sj.bjc.6603927

42 on September 24, 2021 by guest. Protected copyright. 43 12 Pitts M, Dyson S, Rosenthal D, et al. Knowledge and awareness of human papillomavirus 44 (HPV): attitudes towards HPV vaccination among a representative sample of women in 45 Victoria, Australia. Sex Health 2007;4:177–80. doi:http://dx.doi.org/10.1071/SH07023 46 47 13 Forster A, Wardle J, Stephenson J, et al. Passport to promiscuity or lifesaver: press coverage 48 of HPV vaccination and risky sexual behavior. J Health Commun 2010;15:205–17. 49 doi:10.1080/10810730903528066 50 51 14 Kelly BJ, Leader AE, Mittermaier DJ, et al. The HPV vaccine and the media: how has the topic 52 been covered and what are the effects on knowledge about the virus and cervical cancer? 53 Patient Educ Couns 2009;77:308–13. doi:10.1016/j.pec.2009.03.018 54 55 15 Marlow LAV, Zimet GD, McCaffery KJ, et al. Knowledge of human papillomavirus (HPV) and 56 HPV vaccination: an international comparison. Vaccine 2013;31:763–9. 57 doi:10.1016/j.vaccine.2012.11.083 58 59 60 20 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 21 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 16 Ashe TE, Elter JR, Southerland JH, et al. North Carolina Dental Hygienists ’ Oral. J Cancer 4 Educ 2009;21:151–6. doi:10.1207/s15430154jce2103 5 6 17 Luryi AL, Yarbrough WG, Niccolai LM, et al. Public awareness of head and neck cancers: a 7 crosssectional survey. JAMA Otolaryngol Head Neck Surg 2014;140:639–46. 8 doi:10.1001/jamaoto.2014.867 9 10 18 Brewer NT, Ng TW, McRee AL, et al. Men’s beliefs about HPVrelated disease. J Behav Med 11 2010;33:274–81. doi:10.1007/s1086501092512 12 13 19 Warnakulasuriya KA, Harris CK, Scarrott DM, et al. An alarming lack of public awareness 14 towards oral cancer. Br Dent J 1999;187:319– 15 22.http://www.ncbi.nlm.nih.gov/pubmed/10589135For peer review only 16 17 20 West R, Alkhatib MN, McNeill a, et al. Awareness of mouth cancer in Great Britain. Br Dent J 18 2006;200:167–9, discussion 151. doi:10.1038/sj.bdj.4813197 19 20 21 O’Connor T, Papanikolaou V, Keogh I. Public knowledge of head and neck cancer. Ir Med J 21 2010;103:105–7. 22 23 22 Güneri P, Epstein JB. Late stage diagnosis of oral cancer: Components and possible solutions. Oral Oncol 2014;50:1131–6. doi:10.1016/j.oraloncology.2014.09.005 24 25 26 23 Daley E, DeBate R, Dodd V, et al. Exploring awareness, attitudes, and perceived role among oral health providers regarding HPVrelated oral cancers. J Public Health Dent 2011;71:136– 27 42. doi:10.1111/j.17527325.2011.00212.x 28 29 24 Passalacqua R, Caminiti C, Salvagni S, et al. Effects of media information on cancer patients’ 30 opinions, feelings, decisionmaking process and physicianpatient communication. Cancer 31 2004;100:1077–84. doi:10.1002/cncr.20050 32 33 25 James C, James N, Davies D, et al. Preferences for different sources of information about 34 cancer. Patient Educ Couns 1999;37:273–82. http://bmjopen.bmj.com/ 35 36 26 Metcalfe D, Price C, Powell J. Media coverage and public reaction to a celebrity cancer 37 diagnosis. J Public Health (Oxf) 2011;33:80–5. doi:10.1093/pubmed/fdq052 38 39 27 Lancucki L, Sasieni P, Patnick J. The impact of Jade Goody’s diagnosis and death on the NHS 40 Cervical Screening Programme. 2012;19:89–93. 41

42 28 Kamenova K, Reshef A, Caulfield T. Angelina Jolie’s faulty gene: newspaper coverage of a on September 24, 2021 by guest. Protected copyright. 43 celebrity's preventive bilateral mastectomy in Canada, the United States, and the United 44 Kingdom. Genet Med 2014;16:522–8. doi:10.1038/gim.2013.199 45 46 29 Fishbein M, Yzer M. Using theory to design effective health behavior interventions. Commun 47 Theory 2003;13:164–83. doi:10.1111/j.14682885.2003.tb00287.x. 48 49 30 Cancer Research UK. Be Clear on Cancer evaluation update 2014:1–10. 50 http://www.cancerresearchuk.org/sites/default/files/evaluation_results_2014.pdf (accessed 51 November 9 2015) 52 53 31 Newsworks. Newsbrands 2015. http://www.newsworks.org.uk/MarketOverview (accessed 54 November 9, 2015). 55 56 32 Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, 57 Burgess R, eds. Analysing Qualitative Data. London: Routledge 1994. 173–94. 58 59 60 21 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 22 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 33 Johnson JQ, Sionean CS, Scott AM. Exploring the Presentation of News Information About the 4 HPV Vaccine: A Content Analysis of a Representative Sample of U.S. Newspaper Articles. 5 Health Commun 2011;26:491–501.10.1080/10410236.2011.556080 6 7 34 Penta MA, Baban A. Mass media coverage of HPV vaccination in Romania: a content 8 analysis. Health Educ Res 2014;29:977–92.doi:10.1093/her/cyu027 9 10 35 Cohen J. A coefficient of agreement for nominal scales. Educ Psychol Meas 1960;20:37–46. 11 12 36 Landis JR, Koch GG. The measurement of observer agreement for categorical data. 13 Biometrics 1977;33:159–74. doi:10.2307/2529310 14 15 37 KreimerFor AR, Johansson peer M, Waterboer review T, et al. Evaluation of humanonly papillomavirus antibodies 16 and risk of subsequent head and neck cancer. J Clin Oncol 2013;31:2708–15. 17 doi:10.1200/JCO.2012.47.2738 18 19 38 Stryker JE, Moriarty CM, Jensen JD. Effects of newspaper coverage on public knowledge 20 about modifiable cancer risks. Health Commun 2008;23:380–90. 21 doi:10.1080/10410230802229894 22 23 39 Dodd RH, Marlow LAV, Waller J. Discussing a diagnosis of human papillomavirus oropharyngeal cancer with patients: An exploratory qualitative study of health professionals. 24 Head Neck 2014;44:1–21. 25 26 40 Braun V, Gavey N. prevention interventions for cervical cancer. Aust N Z J Public Health 27 1998;22:353–9. 28 29

30 31 32 33

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1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 Figure 1: The number of UK media articles reporting on the link between oral cancer and HPV from 2001- 24 2014 25 340x162mm (300 x 300 DPI) 26 27 28 29 30 31 32 33

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42 on September 24, 2021 by guest. Protected copyright. 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

PRINT AND ONLINE NEWSPAPER COVERAGE OF THE LINK BETWEEN HPV AND ORAL CANCER IN THE UK: A MIXED METHODS STUDY

For peer review only Journal: BMJ Open

Manuscript ID bmjopen-2015-008740.R2

Article Type: Research

Date Submitted by the Author: 17-Dec-2015

Complete List of Authors: Dodd, Rachael; UCL, Epidemiology and Public Health Marlow, Laura; UCL, Epidemiology and Public Health Forster, Alice; UCL, Epidemiology and Public Health Waller, Jo; UCL, Epidemiology and Public Health

Primary Subject Communication Heading:

Secondary Subject Heading: Health services research, Qualitative research

Keywords: Human Papillomavirus, Oral cancer, Media, United Kingdom

http://bmjopen.bmj.com/

on September 24, 2021 by guest. Protected copyright.

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1 2 3 PRINT AND ONLINE NEWSPAPER COVERAGE OF THE LINK BETWEEN HPV AND ORAL 4 CANCER IN THE UK: A MIXED METHODS STUDY 5

6 7 Rachael H. Dodd MSc, Laura A.V. Marlow PhD, Alice S. Forster, PhD, Jo Waller PhD 8 9 10 Cancer Research UK Health Behaviour Research Centre, Department of Epidemiology & Public 11 Health, UCL, Gower Street, London WC1E 6BT, United Kingdom 12

13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27

28 29 30 31 32 33

34 http://bmjopen.bmj.com/ 35 36 37 38 39 40 Keywords: Human papillomavirus, oral cancer, media, United Kingdom 41

42 on September 24, 2021 by guest. Protected copyright. 43 Word Count: 4484 44 45 46 Corresponding author: 47 R Dodd, Health Behaviour Research Centre 48 Department of Epidemiology and Public Health 49 50 UCL 51 Gower Street 52 London WC1E 6BT, UK 53 54 [email protected] 55 Tel: +44 (0)20 7679 8234 56 57 Fax: +44 (0)20 7679 8354 58 59 60 1 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 2 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 ABSTRACT 4 5 Objectives: The role of human papillomavirus (HPV) in some oral cancers has been reported in the 6 7 news press, though little is known about the content of these articles. This study aimed to examine 8 how frequently the link between HPV and oral cancer has been reported in the news press and to 9 10 examine the content of these articles. 11 12 13 Design: UK media articles were searched for articles relating to oral cancer and HPV in the database 14 15 NexisUK. Of 854For articles identifiedpeer by the initial review search, 112 were eligible only for inclusion (2002-2014) 16 17 and content analysis was used to determine the main themes discussed. 18 19 Results: Themes included: actor Michael Douglas’ claim that his throat cancer was caused by HPV, 20 21 the riskiness of oral sex, health information (including HPV as a cause of oral cancer) and the need to 22 23 vaccinate boys against HPV. Many articles also referred to the link between HPV and cervical cancer 24 25 and the increasing incidence of HPV-related oral cancer. The largest peak in articles occurred when 26 27 Michael Douglas discussed his cancer (June 2013). Facts about HPV and references to research 28 29 were provided in some articles. 30 31 Conclusions: The link between HPV and oral cancer and the transmission of HPV via oral sex was 32 33 regularly discussed, yet coverage often lacked detailed health information. This could increase

34 http://bmjopen.bmj.com/ 35 awareness of the link between oral sex and HPV risk, but may also lead to public concern about oral 36 37 sex as a sexual behaviour. 38 39

40 Article summary 41 Strengths and limitations of this study: 42 on September 24, 2021 by guest. Protected copyright. 43 44 • This is the first study to examine the content of newspaper articles addressing the relationship between 45 HPV and some oral cancers. 46 47 • Using NexisUK to examine UK media coverage of the link between HPV and oral cancer provides a 48 49 systematic analysis of a large number of publications. 50 51 • This study is limited to UK publications and to print and online media, so the results may not be 52 53 representative of wider information available to the public. 54 55 • The articles in the study were only examined for content and not for accuracy of the information 56 57 presented. 58 59 60 2 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 3 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 INTRODUCTION 4 5 6 Traditional risk factors for oral cancer are tobacco and alcohol, but there is now overwhelming 7 evidence that human papillomavirus (HPV) plays a causal role in some types of the disease [1–4]. At 8 9 least 25% of the estimated 85,000 oropharyngeal cancers diagnosed worldwide in 2008 were HPV- 10 11 positive [5]. HPV is a common sexually transmitted infection, with high risk types shown to be 12 13 responsible for up to 5% of all cancers worldwide, particularly cervical and other anogenital cancers 14 15 [6]. The main Forrisk factors forpeer transmission of reviewHPV are thought to be aonly greater number of sexual and 16 17 (for oral infection) oral sex partners [7–10] due to greater exposure to the virus. 18 19 Prior to the introduction of the HPV vaccination in 2008, public awareness of HPV (primarily in the 20 21 context of cervical cancer) was measured in population-based studies to be between 25 and 50% 22 23 [11,12]. The HPV vaccination attracted a lot of media attention [13] and knowledge of HPV appears to 24 25 have increased following its introduction [14]. In an online survey across the UK, US and Australia 26 27 following the introduction of HPV vaccine, 39% of men and 62% of women in the UK reported having 28 29 heard of HPV [15]. 30 31 In the oral cancer context, no UK studies have yet examined knowledge that HPV is a risk factor for 32 33 oral cancer. In the US, dental hygienists in North Carolina were found to have low knowledge of HPV

34 http://bmjopen.bmj.com/ 35 as a risk factor for oral cancer compared with tobacco and alcohol [16]. In a US population-based 36 37 online survey, HPV was recognised as a common risk factor for mouth and throat cancer by fewer 38 39 than 1% of participants, and even when prompted explicitly about the link, just 13% said they had 40 heard of the association [17]. In an internet survey of men, a greater proportion linked HPV with 41

42 genital warts than with oral cancer, with 43% identifying infection with HPV as a potential cause of on September 24, 2021 by guest. Protected copyright. 43 44 oral cancer [18]. Public awareness of the signs and risk factors for head and neck cancer has also 45 46 been shown to be poor [19–21] and the majority of oral cancers are diagnosed at an advanced stage 47 48 [22]. 49 50 51 As the media has been shown to influence people’s beliefs [23] and is considered a major source of 52 health information for many [24], it is possible that media coverage of the link between HPV and oral 53 54 cancer may influence public awareness and perceptions. The British media is no stranger to reporting 55 56 stories about people in the public eye with cancer, most notably the stories of Jade Goody (an English 57 58 reality television personality), Kylie Minogue (an Australian singer/songwriter) and Angelina Jolie (an 59 60 3 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 4 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 American actress). Metcalfe and colleagues reported that an increased public interest in disease 4 5 prevention can follow a celebrity diagnosis [25]. In the UK, the case of Jade Goody (who died of 6 7 cervical cancer) was associated with an increase in the number of women attending cervical 8 screening [26]. In 2013, American actor Michael Douglas disclosed in an interview with The Guardian 9 10 newspaper that his throat cancer was ‘caused by HPV which actually comes about from cunnilingus’. 11 12 This disclosure received global attention, giving the media an opportunity to discuss the link between 13 14 HPV and oral cancer. However, media reports are sometimes criticised for the lack of detail they 15 For peer review only 16 provide, for example with the announcement of Angelina Jolie’s double mastectomy many failed to 17 18 give information about the rarity of her condition [27]. 19 20 Media priming may be used to strengthen the association between a person's existing beliefs and 21 22 their subsequent behaviour by making these beliefs more accessible [28]. Mass media campaigns for 23 24 cancers such as breast and lung (e.g. the Cancer Research UK Be Clear on Cancer campaign) have 25 26 been shown to be effective in increasing awareness of key symptoms for these cancers and 27 28 increases in GP attendance [29]. As this shows, media coverage is one route through which public 29 30 understanding of health issues might be improved, but little is known about British media coverage of 31 the link between HPV and oral cancer. The media has been shown to be a common source of 32 33 information about HPV [12] and greatly influences public opinion, and as such it is crucial to examine 34 http://bmjopen.bmj.com/ 35 how the link is portrayed by the British media. As the media may play an important role in fulfilling the 36 37 information needs of the public, examining the content of articles will establish what information is 38 39 being conveyed and how this is communicated. This study aimed to examine how frequently the link 40 41 between HPV and oral cancer has been reported in the news press and whether this has changed

42 on September 24, 2021 by guest. Protected copyright. 43 over time. The study also aimed to examine the content of the articles, in particular looking at the 44 main topics reported and how the link between HPV and oral cancer has been presented. 45 46 47 METHOD 48 49 50 The NexisUK database was used to search for print and online articles in the UK relating to HPV and 51 52 oral cancer. NexisUK is an online database providing full text access to international, national and 53 regional news sources, and is updated daily. The search was conducted on the 20th August 2014 with 54 55 no date limits applied. The search terms ‘oral cancer’, ‘mouth cancer’, ‘throat cancer’, ‘oropharyngeal 56 57 cancer’, ‘head and neck cancer’ were entered into the database separately, limited to major mentions 58 59 60 4 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 5 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 (in the headline, lead paragraph or indexing) and combined with [HPV OR human papillomavirus] 4 5 within UK publications. Newswire and non-business news publications (e.g. obituaries, sports) were 6 7 not searched. The full text of each publication was reviewed by RD. Newspaper articles were 8 categorised using Newsworks [30] as “broadsheet” newspapers (more intellectual in content e.g. The 9 10 Guardian, The Times), “middle market” newspapers (coverage of entertainment and important news 11 12 stories e.g. Sunday Express, London Evening Standard) and “tabloid newspapers” (reporting mostly 13 14 on sensational material e.g. The Sun, Kidderminster Shuttle). Regional newspapers were categorised 15 For peer review only 16 by discussion. 17 18 Quantitative Analysis - Frequency of articles 19 20 The frequency of reporting of the link between HPV and oral cancer was analysed using a frequency 21 22 count. The number of articles per month reporting the link was plotted from the first publication to the 23 24 most recent publication. 25 26 27 Qualitative Analysis - Content of the articles 28 29 The headlines of all articles were analysed descriptively. The content of eligible articles was analysed 30 31 using Framework Analysis [31]. RD first familiarised herself with the content by reading through all the 32 33 eligible articles, making notes of recurring themes and summarising each article. Using the qualitative

34 http://bmjopen.bmj.com/ 35 package NVivo 10, a list of codes was generated from the data and these codes were applied to the 36 37 data. The data were summarised and organised into a matrix of main themes and sub-themes, with 38 39 each row representing an article and each column representing a theme/sub-theme. AF coded 20% of 40 the articles to test inter-rater reliability. Second coding of 20% of the articles has been considered 41

42 sufficient in similar studies [32,33]. Cohen’s Kappa across all themes was 0.71 representing a on September 24, 2021 by guest. Protected copyright. 43 44 substantial agreement [34,35]. Table 1 shows Cohen's Kappa for each main theme and sub-themes. 45 46 Any disagreements were resolved by discussion and the remaining articles were coded by RD alone. 47 48 Short quotations illustrating each theme are presented in the text, and additional quotes are 49 50 presented in Table 2, along with the publication title, date published and quotation number. 51 52 RESULTS 53 54 Article characteristics 55 56 57 58 59 60 5 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 6 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 A total of 854 UK articles were identified. Articles were excluded if they were i) duplicates (articles 4 5 published around the same time, with the same number of words in the same publication and 6 7 duplicating text) (n=477); ii) were published in a specialist magazine or publication (n=80); or iii) did 8 not mention the link between oral cancer and HPV (n=32). Following these exclusions, 265 articles 9 10 were eligible for inclusion in the quantitative analysis. An additional 153 articles were excluded from 11 12 the qualitative analysis because they included fewer than 100 words about the link between oral 13 14 cancer and HPV. These articles tended to include a sentence about the link between HPV and oral 15 For peer review only 16 cancer as part of a story with a different focus; they did not have sufficient text to merit qualitative 17 18 analysis. Overall 112 articles were suitable for the qualitative analysis. 19 20 The newspapers with the greatest number of articles eligible for qualitative analysis were The Times 21 22 (n=16), MailOnline (n=10), The Guardian (n=8) and The Independent (n=9). Broadsheet newspapers 23 24 accounted for 54% of the articles, 21% were from middle-market newspapers and 25% were from 25 26 tabloid newspapers. With regards to average length, broadsheet articles tended to be longer (530 27 28 words average), followed by those in middle market newspapers (472 words average), with tabloid 29 30 newspapers having the shortest (458 words average) articles. A fairly small proportion of articles 31 (18/112; 16%) articles were published in regional papers. 32 33

34 Quantitative analysis - Frequency of articles http://bmjopen.bmj.com/ 35 36 37 No UK publications reported the link between HPV and oral cancer prior to 2001. Figure 1 shows the 38 39 frequency of articles published per month mentioning the link between HPV and oral cancer. There 40 was a steady number of articles reporting on the link, but for most years, on average, fewer than two 41

42 articles were published per month across the newspapers. The largest number of articles reporting on on September 24, 2021 by guest. Protected copyright. 43 44 the link between HPV and oral cancer was seen in 2013 (112/265). Broadsheet newspapers first 45 46 reported that there was a link between HPV and oral cancer in October 2001, followed by tabloid 47 48 newspapers in February 2004 and middle market newspapers in November 2009. 49 50 51 There was a noticeable peak in June 2013 (45/265) with 34/45 of these discussing Michael Douglas' 52 throat cancer being caused by HPV. There were a few small peaks in articles published in May 2007 53 54 (6/265), with 5/6 discussing a research paper which further demonstrated the link between oral sex 55 56 and throat cancer [7], in March 2012 (7/265) reflecting the publication of figures demonstrating a rise 57 58 59 60 6 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 7 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 in mouth cancers, and in November 2013 (16/265) with 10/16 articles reflecting on mouth cancer 4 5 awareness month. 6 7 Figure 1 here 8 9 10 Qualitative analysis - Content of the articles 11 12 Headlines 13 14 15 About one thirdFor (35/112) of peerthe headlines mentioned review oral sex (e.g. ‘Oral only sex can lead to mouth cancer’ 16 Birmingham Post, 26 February 2004) and Michael Douglas was mentioned in a quarter (28/112) of 17 18 the headlines (e.g. ‘Michael Douglas says cunnilingus gives you cancer but is he right?’ The 19 20 Guardian, 2 June 2013). ‘Throat cancer’ was the most frequently used term for the disease, mostly 21 22 reflecting the terminology used by Douglas himself, with ‘mouth cancer’ and ‘oral cancer’ also used. 23 24 Some headlines (33/112; 29%) emphasised the risk of oral sex and cancer (e.g. 'Mouth cancer rise in 25 26 young people is linked to oral sex' The Metro, 16 March 2012), and some used the words ‘risk’, ‘alert’ 27 28 and ‘dangers’ when referring to the link between HPV and oral cancer: 29 30 ‘Your life: Oral Sex cancer risk’ (Daily Mirror, 28 March 2010) 31 32 33 ‘Early alert for throat cancer’ (The Times, 22 July 2013)

34 http://bmjopen.bmj.com/ 35 ‘Stay alive to the dangers of mouth cancer’ (Kidderminster Shuttle, 6 November 2010) 36 37 38 Others emphasised the sexual nature of the link using terms like ‘sex virus’, ‘will oral sex ever feel 39 40 safe again’ and ‘struck a blow for oral sex’. 41

42 on September 24, 2021 by guest. Protected copyright. 43 Article content 44 45 Four main themes emerged from the content analysis of the reviewed articles: Michael Douglas’ 46 47 disclosure, the riskiness of oral sex, health information communicated about HPV, including HPV as a 48 49 cause of oral cancer and its incidence, and the need to vaccinate boys against HPV. 50 51 52 Michael Douglas’ disclosure 53 54 In June 2013, Michael Douglas revealed that HPV was responsible for his throat cancer and that it 55 56 was transmitted through oral sex. This disclosure was more commonly reported in broadsheet 57 58 newspapers. There was a peak in the number of articles covering this link (34/112; 30%) in June 59 60 7 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 8 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 2013, including those which reported on Michael Douglas’ subsequent assertion that he was talking 4 5 about causes of oral cancer more generally, rather than being specific to him (MailOnline, 4 June 6 7 2013, Q1). 8 9 Table 1: Main themes and sub-themes with inter-rater reliability 10 11 Theme (Cohen's Kappa) Description of theme 12 13 Michael Douglas' Disclosure (0.67) The disclosure from Michael 14 Douglas that his throat 15 For peer review onlycancer was caused by HPV 16 17 Health Information (0.70) Represents information 18 communicated about HPV a. HPV as cause of oral cancer (0.73) 19 and oral cancer related to b. Incidence of oral cancer (0.61) 20 health. The sub-themes c. Information about HPV (0.62) represent specific health 21 1. Cause of cervical cancer information given about HPV 22 2. How common HPV is and oral cancer 23 3. Number of different types of 24 HPV 25 4. Demographic changes 26 d. Better prognosis and survival (0.79) 27 e. Diagnosis and treatment for oral (0.77) 28 cancer 29 f. Symptoms and screening for oral (0.56) 30 cancer 31 g. Cited research evidence (0.69) 32 Riskiness Of Oral Sex (0.77) Represents information 33 communicated about the 34 recognition of oral sex in the http://bmjopen.bmj.com/ 35 cause of oral cancer and 36 how changes in sexual 37 practice are thought to 38 account for this 39 40 Vaccination Of Boys (0.85) Represents the calls for boys 41 to be vaccinated in light of

42 the evidence that HPV on September 24, 2021 by guest. Protected copyright. 43 doesn't only cause oral 44 cancer, but other cancers as 45 well 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 8 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 9 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Table 2: Quotes from themes and sub-themes 4 5 Quote (Q) Quotes Themes Newspaper 6 number information 7 1 ‘Michael Douglas did not say cunnilingus Michael Douglas' MailOnline, was the cause of his cancer. It was disclosure 8 4 June 2013 discussed that oral sex is a suspected 9 cause of certain oral cancers...but he did 10 not say it was the specific cause of his 11 personal cancer’ 12 13 2 ‘Even with statements from his publicist Michael Douglas' The Telegraph, denying he had put the blame on oral disclosure 14 4 June 2013 sex specifically, this genie is not going 15 Forback in the bottle.peer And perhaps review that's a only 16 good thing’ 17 18 3 ‘Oral sex can lead to mouth cancer, Riskiness of oral sex Birmingham Post, according to new research.’ 19 26 February 2004 20 4 ‘What is most strongly linked to oral HPV Riskiness of oral sex The Guardian, 21 infection is the number of sexual 21 February 2011 22 partners someone has had in their 23 lifetimes, in particular the number of 24 individuals on whom they have 25 performed oral sex.’ 26 27 5 ‘A US study showed about 10 per cent of Riskiness of oral sex London Evening men aged 14 to 69 have an oral HPV Standard, 28 infection, compared with 3.6 per cent of 4 June 2013 29 women. Because HPV-related oral 30 cancer is twice as common in men as in 31 women, cunnilingus is considered riskier 32 than fellatio.’ 33 6 ‘Without wanting to get too specific, this Riskiness of oral sex The Times, 34 http://bmjopen.bmj.com/ particular cancer is caused by HPV, 35 5 June 2013 which actually comes about from 36 cunnilingus...But yeah, it's a sexually 37 transmitted disease that causes cancer. 38 And if you have it, cunnilingus is also the 39 best cure for it.’ 40 7 ‘If you have an ulcer that doesn't heal Health information: Daily Mirror, 41 after three weeks, see your dentist or Symptoms

28 March 2008 on September 24, 2021 by guest. Protected copyright. 42 doctor.’ 43 44 8 ‘Just a few strains cause problems, but Health information: MailOnline, one in particular, HPV-16, is known to Information about HPV 45 16 March 2012 46 cause cell changes which could develop 47 into cancer.’ 48 9 ‘Given that subgroups of people with Health information: The Western Mail, HPV-related H&N [head and neck] Diagnosis and treatment 49 25 February 2013 50 cancers display excellent survival, these 51 patients may in future be offered less 52 aggressive treatment...’ 53 10 ‘Men are advised to check their neck for Health information: MailOnline, 54 lumps when shaving and both sexes to Symptoms 13 November 2013 55 look at the back of their throat while 56 brushing their teeth’ 57 58 59 60 9 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 10 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 11 ‘HPV is really, really common - to the Health information: The The Guardian, point that if you're a sexually active adult, high prevalence of HPV 4 2 June 2013 5 you've probably had it. By the age of 25, 6 90% of sexually active people will have 7 been exposed to some form of genital HPV’ 8 9 12 ‘Increased recovery rates among this Health information: Better The Guardian, kind of cancer sufferer. This would help prognosis and survival 10 2 June 2013 11 explain why Douglas was given an 80% 12 chance of survival, despite the advanced 13 stage of his illness.’ 14 13 ‘In Britain, the number of mouth and Health information: The MailOnline, 15 throat cancers have increased by 40 per incidence of oral cancer For peer review only 3 June 2013 16 cent in just a decade’ 17 14 ‘Treatments such as chemotherapy, Health information: Better MailOnline, 18 radiotherapy and surgery are often more prognosis and survival 16 July 2013 19 successful in mouth and throat cancers 20 caused by the virus than those caused 21 by tobacco and alcohol.’ 22 15 ‘These striking results provide some Health information: HPV The Times, 23 evidence that HPV16 infection may be a causes oral cancer 26 July 2013 24 significant cause of oropharyngeal 25 cancer.’ 26 27 16 ‘Mouth cancer survival rates of about Health information: Daily Mirror, 50% haven't changed in decades, but if Diagnosis and treatment 28 28 February 2014 the disease is caught early patients can 29 have a 90% chance of a cure.’ 30 31 17 Professor Maura Gillison - ‘The time has HPV Vaccination for boys The Independent, come to have a more thorough 32 21 February 2011 33 discussion about the potential benefits of

34 HPV vaccines in boys … When my http://bmjopen.bmj.com/ 35 patients ask whether they should vaccinate their sons [with the HPV 36 vaccine], I say 'certainly'. The vaccine 37 will protect them against genital warts 38 and anal cancer and - as a potential by- 39 product of that - it may protect them 40 against oral cancer caused by HPV … 41 The time has come to consider offering

42 the HPV vaccine to boys, she said." on September 24, 2021 by guest. Protected copyright. 43 18 Professor Margaret Stanley – ‘it is not HPV Vaccination for boys MailOnline, 44 ethical, fair or socially responsible to 3 June 2013 45 have a public-health policy that forces 46 men to rely on herd immunity, which 47 won't be reached for decades.’ 48 19 ‘We [Department of Health] recognise HPV Vaccination for boys The Independent, 49 that the current vaccination programme 2 February 2014 50 does not offer protection against HPV- 51 related cancers for gay men’ 52 53 20 ‘Campaigners are calling for boys to HPV Vaccination for boys Daily Mirror, have the jab too in order to stem the 54 28 February 2014 55 "catastrophic rise" in cancers’

56 57 NB: To avoid repetition, none of the quotes included in the text are included in the table 58 59 60 10 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 11 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 4 There were suggestions in some of the articles that Michael Douglas had raised awareness of the link 5 6 between HPV and oral cancer and had ‘broken the last taboo for men’ by raising the topic of oral sex 7 8 (The Telegraph, 4 June 2013, Q2). 9 10 11 Riskiness of oral sex 12 13 A large number (83/112; 74%) of the articles mentioned oral sex as a cause of mouth cancer 14 15 (Birmingham PostFor, 26 February peer 2004, Q3). review only 16 17 18 HPV was mentioned as being transmitted through oral sex, with articles quoting Michael Douglas 19 20 including the term ‘cunnilingus’ and stating that HPV is a sexually transmitted disease (The Times, 5 21 June 2013, Q6). 22 23 24 This disclosure from Michael Douglas led some articles to discuss the risk of different sexual 25 26 behaviours e.g. ‘is cunnilingus inherently riskier than fellatio?’ (The Guardian, 2 June 2013) with a 27 28 number of these providing research findings (London Evening Standard, 4 June 2013, Q5). 29 30 31 Some articles (14/112; 13%) expressed the belief that the rise in throat cancer was due to changes in 32 sexual practice: ‘the rise in HPV-related throat cancer is being seen as the legacy of the sexual 33 34 revolution that began in the 1960s’ (The Independent, 21 January 2012), with an increase in oral sex http://bmjopen.bmj.com/ 35 36 practices leading to increases in oral HPV and therefore throat cancer (The Guardian, 21 February 37 38 2011, Q4). 39 40 41 The link between oral sex and mouth cancer was not as clear cut, according to Cancer Research UK

42 on September 24, 2021 by guest. Protected copyright. quoted to have said ‘it was unclear if it was linked with oral sex’ (The Independent, 16 March 2012). A 43 44 few (5/112; 4%) of the articles suggested that HPV transmitted through oral sex ‘could overtake 45 46 tobacco and alcohol as the main risk factor in the next decade’ (Western Morning News, 23 47 48 November 2010). 49 50 51 It was also acknowledged that ‘oral sex is a topic which could not have been discussed openly even 52 53 recently’ (The Telegraph, 4 June 2013). 54 55 56 57 58 59 60 11 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 12 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 One article asked ‘should oral sex be off the agenda’ (Daily Mirror, 28 February 2014), with other 4 5 articles terming oral sex as ‘now officially life-threatening’ (The Times, 26 May 2007) and that HPV is 6 7 a ‘devastating virus’ (The Sun, 13 February 2014). 8 9 Health information 10 11 12 Most of the articles providing health information focused on the link between HPV and oral cancer. 13 14 Table 3 shows what health information was presented in each type of publication. The different types 15 For peer review only 16 of information are discussed below. 17 18 HPV causes oral cancer: As mentioning the link between HPV and oral cancer was an inclusion 19 20 criteria, all articles included this, with the majority (88/112; 79%) of the articles mentioned the link 21 22 between HPV and oral cancer within the first 100 words. The terms used were inconsistent, with 23 24 mouth cancer, oral cancer and throat cancer used interchangeably. Some articles were more specific 25 26 about the type of cancer caused (The Times, 26 July 2013, Q15). 27 28 The incidence of oral cancer: 61/112 (54%) articles reported on the incidence of oral cancer, with 29 30 57/112 (51%) reporting that the number of cases was increasing. One newspaper quoted a Cancer 31 32 Research UK expert as describing ‘an emerging epidemic’ [in oral cancer] and 5/112 (4%) quoted 33

34 Cancer Research UK as linking the HPV virus to the ‘rapid rise’ [in oral cancer cases] (MailOnline, 3 http://bmjopen.bmj.com/ 35 36 June 2013, Q13). 37 38 A change in the demographic characteristics of those being diagnosed with oral cancer was also 39 40 mentioned in a number of the articles (49/112; 44%), emphasising that patients are increasingly 41

42 younger, male, non-smokers and from professional backgrounds. A few (9/112; 8%) articles also on September 24, 2021 by guest. Protected copyright. 43 44 suggested that there was a shift towards more women getting oral cancer. 45 46 47 Information about HPV: Over half of the articles also mentioned HPV as a cause of cervical cancer 48 (63/112; 56%) and presented information about there being ‘more than 100 variants’ of HPV. 19/112 49 50 (17%) articles highlighted that not all types of HPV cause cancer (MailOnline, 16 March 2012, Q8). 51 52 53 The high prevalence of HPV: In 30/112 (27%) articles it was mentioned that most people will be 54 55 infected with HPV at some point (The Guardian, 2 June 2013, Q11). 56 57 58 59 60 12 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 13 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 A total of 16/112 (14%) articles expressed the need for increased awareness of the link between HPV 4 5 and oral cancer, for example ‘few people can recognise its symptoms’ (Kidderminster Shuttle, 6 6 7 November 2010). Nigel Carter, Chief Executive of the British Dental Health Foundation was quoted as 8 saying, ‘there is a clear gap in public knowledge about what causes mouth cancer’ (Daily Mirror, 28 9 10 February 2014). 11 12 13 Better prognosis and survival: The positive prognosis and survival rates of HPV-related oral cancer 14 15 were discussedFor (18/112; 16%),peer sometimes inreview the context of Michael Douglas’only own survival (The 16 17 Guardian, 2 June 2013, Q12). 18 19 Survival was also discussed in comparison to oral cancers without HPV as a cause (MailOnline, 16 20 21 July 2013, Q14). 22 23 24 Diagnosis and treatment: Early diagnosis of oral cancer was mentioned as giving a ‘better chance of 25 26 successful treatment’ (Daily Mirror, 28 February 2014, Q16) by 14/112 (13%) articles. 27 28 Treatment methods, particularly chemotherapy and radiotherapy were mentioned, as well as the 29 30 possibility for less invasive treatment in the future (The Western Mail, 25 February 2013, Q9). 31 32 33 Symptoms: Symptoms of oral cancer were reported more frequently in tabloids and middle-market

34 http://bmjopen.bmj.com/ 35 newspapers than in broadsheets (Daily Mirror, 28 March 2008, Q7). 36 37 The importance of dentists was emphasised, explaining that they play a vital role in oral cancer 38 39 diagnosis as well as doctors. Advice was given as a slogan, ‘If in doubt, get checked out’ and ways to 40 41 look for symptoms of oral cancer were suggested (MailOnline, 13 November 2013, Q10).

42 on September 24, 2021 by guest. Protected copyright. 43 44 Case studies were also included and often illustrated the symptoms of HPV-related oral cancer, the 45 46 invasive and challenging treatment involved, and the importance of regular dental check-ups. 47 48 Cited research: Fewer than half (42/112; 38%) referred to research findings from peer-reviewed 49 50 journals. Research that was cited included studies showing the increase in incidence and burden of 51 52 HPV-related oral cancer, showing evidence for oropharyngeal cancer patients carrying antibodies to 53 54 the E6 protein from the HPV16 virus [36] and evidence for number of oral sex partners as a risk factor 55 56 for HPV [7]. 57 58 59 60 13 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 14 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Table 3: Themes mentioned in articles across the publication types 4 5 Number of articles including each theme 6 All 7 Broadsheet Middle-market Tabloid Theme publications 8 (n=61) (n=23) (n=28) 9 (n=112) 10 Michael Douglas' Disclosure 50 (45%) 25 (41%) 14 (61%) 11 (39%) 11 12 Health information 13 14 Link oral cancer and HPV 112 (100%) 61 (100%) 23 (100%) 28 (100%) 15 For peer review only 16 Incidence of oral cancer 61 (54%) 29 (48%) 13 (57%) 19 (68%) 17 18 19 Information about HPV 20 21 Cause of cervical cancer 63 (56%) 33 (54%) 12 (52%) 18 (64%) 22 23 100 variants of HPV 11 (10%) 5 (8%) 3 (13%) 3 (11%) 24 25 8/10 will contract HPV 12 (11%) 5 (8%) 3 (13%) 4 (14%) 26 27 90% will contract HPV by age 25 6 (5%) 6 (10%) 0 0 28 29 Better prognosis and survival 18 (16%) 4 (7%) 10 (43%) 4 (14%) 30 31 Diagnosis and treatment 29 (26%) 10 (16%) 10 (43%) 9 (32%) 32 33 Symptoms and screening 36 (32%) 15 (25%) 10 (43%) 11 (39%)

34 http://bmjopen.bmj.com/ 35 Riskiness of oral sex 83 (74%) 42 (69%) 20 (87%) 21 (75%) 36 37 Vaccination of boys 40 (36%) 22 (36%) 6 (26%) 12 (43%)

38 39 40 HPV Vaccination for boys 41

42 on September 24, 2021 by guest. Protected copyright. 43 The link between oral sex and oral cancer was given as a strong reason for boys to be vaccinated 44 45 against HPV. HPV Action, a group campaigning for the vaccination of boys, was mentioned in three 46 47 articles. Many of the articles covering news of campaigns to vaccinate boys spoke of the opportunity 48 49 for the vaccine to reduce the number of oral cancer cases in men, calling for it to be ‘a gender neutral 50 51 vaccination’ (Daily Mirror, 28 February 2014, Q20). 52 53 Arguments were made about the cost effectiveness of introducing the vaccine for boys (5/112; 4%) 54 55 and that ‘the Government could save thousands of lives and hundreds of millions of pounds for the 56 57 58 59 60 14 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 15 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 NHS by vaccinating boys against a cancer-causing virus at a cost of around £20m a year’ (The 4 5 Independent, 2 February 2014). 6 7 An argument for vaccinating boys against HPV was also made with reference to other countries as 8 9 Professor John Ashton said ‘It makes sense to give teenage boys as well as girls the HPV vaccine, 10 11 which is already happening in Australia.’ (The Guardian, 19 September 2013). 12 13 14 Men who have sex with men were also acknowledged as an unprotected group in a number of articles 15 For peer review only 16 (7/112 (6%); The Independent, 2 February 2014, Q19). 17 18 It was acknowledged that the HPV vaccination would have to be re-positioned, as parents currently 19 20 know it as ‘the cervical cancer vaccine’. There was also recognition that oral cancer is not the only 21 22 HPV-related cancer to affect boys and that the virus is linked to anal and penile cancers. 23 24 25 Experts were quoted as being in favour of HPV vaccination for boys, including Professor Maura 26 Gillison, who published evidence of the link between HPV and oral cancer (The Independent, 21 27 28 February 2011, Q17; MailOnline, 3 June 2013, Q18). 29 30 31 Jamie Rae of The Throat Cancer Foundation and HPV Action, expressed the view that not 32 33 vaccinating boys is ‘inequitable - in fact, I'd say it's an infringement of human rights, for all boys’ (The

34 http://bmjopen.bmj.com/ 35 Independent, 2 February 2014) and it is ‘a flawed and discriminatory policy’ (The Herald (Glasgow), 36 37 12 June 2013), in the campaign to vaccinate boys against HPV. 38 39 DISCUSSION 40 41

42 This study is the first to analyse print and online newspaper coverage of the link between HPV and on September 24, 2021 by guest. Protected copyright. 43 44 oral cancer in the UK. Coverage of the link between HPV and oral cancer has increased in response 45 46 to major news stories. Articles reporting the link between HPV and oral cancer increased in March 47 2012 as figures showed oral cancer cases to be rising. Michael Douglas’ disclosure in June 2013 48 49 sparked an increase in media interest as well as discussions about vaccinating boys. The main 50 51 themes found to be reported in UK publications were Michael Douglas’ disclosure, the riskiness of 52 53 oral sex, health information including HPV as a cause of oral cancer and its incidence, and the need 54 55 to vaccinate boys against HPV. 56 57 58 59 60 15 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 16 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 All the articles tended to report similar content and the themes remained consistent across the types 4 5 of publication (e.g. broadsheet or tabloid), but how this was presented did differ across publication 6 7 type. Broadsheets were the first type of publication to report on the link in October 2001, followed by 8 tabloids in February 2004 and middle market in November 2009. Results from research were reported 9 10 in fewer than half of the articles. Basic facts about HPV were not reported in all articles, indicating that 11 12 the public does not always receive even basic information which could help relieve any anxieties. 13 14 15 Articles focusingFor on Michael peer Douglas’ disclosure review were more likely to appearonly in broadsheets than the 16 17 other types of publication, which is probably due to the interview being conducted with a Guardian 18 reporter. Previous research has suggested that events such as a celebrity cancer diagnosis can 19 20 create news coverage substantial enough to influence health behaviours such as attending cancer 21 22 screening [26,37]. Oral sex was said to be the cause of Michael Douglas’ cancer in articles talking 23 24 about his disclosure, but there were not many articles addressing what HPV is and the risk factors 25 26 associated with it. There was a missed opportunity to educate the public as many articles did not 27 28 discuss the signs and symptoms of oral cancer and what individuals should do if they find a symptom. 29 30 Tabloid and middle-market newspapers covered these more often than broadsheet newspapers, but 31 only tabloid newspapers mentioned HPV in their coverage on Mouth Cancer Awareness Month, held 32 33 in November every year. As different newspapers appeal to different reader demographics, it is 34 http://bmjopen.bmj.com/ 35 important for communication of HPV and oral cancer to be consistent across all newspaper types to 36 37 minimise inequalities in awareness and consequently health outcomes. 38 39 40 Many of the references to oral sex related to the transmission of HPV. Some of the articles placed 41 emphasis on the risk of oral sex, reporting that those with HPV-related oral cancer are ‘more likely to

42 on September 24, 2021 by guest. Protected copyright. 43 be connoisseurs of cunnilingus and fellatio’. These comments risk HPV-related oral cancer being 44 45 seen as a sign of promiscuity and sensationalise it rather than including facts and presenting an HPV 46 47 infection as common. This, in addition to the information on the rising incidence or HPV-related oral 48 49 cancer, could lead the public to overestimate the prevalence of HPV-related oral cancer. In a study 50 51 with health professionals, normalising HPV by emphasising its high prevalence and association with 52 53 normal sexual behaviour was seen as a key message for patients, to try to minimise any possible 54 negative psychological outcomes [38]. This information is also important for the partners of those 55 56 57 58 59 60 16 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 17 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 diagnosed; we found that some articles suggested Michael Douglas could have contracted HPV from 4 5 his wife, Catherine Zeta-Jones and could suggest that she was to blame. 6 7 As Michael Douglas affirmed that he was talking about causes of oral cancer more generally, rather 8 9 than being specific to him, this could also cause stigma towards HPV-related oral cancer, as the 10 11 public may feel that he was ashamed to admit his throat cancer was caused by oral sex. There is also 12 13 the concern that those who have been diagnosed with HPV-related oral cancer will feel stigmatised, 14 15 so it is importantFor that appropriate peer messages revieware being given about HPVonly to reduce the stigma 16 17 associated with this sexually transmitted infection [39]. Including case studies may help the public 18 empathise with the person in the case study and reduce stigma. However, case studies reported in 19 20 the articles were used to illustrate some of the symptoms for HPV-related oral cancer and how 21 22 invasive and challenging the treatment can be. Endorsements from case studies where symptoms 23 24 were noticed and highlighting good prognosis with early diagnosis may encourage the public to adopt 25 26 health protective behaviours such as checking for lumps and attending the dentist regularly. 27 28 29 Articles which included reasons for vaccinating boys used case studies, Michael Douglas and 30 research to support their campaigns. he media has been shown to increase knowledge of HPV after 31 T 32 33 coverage of the introduction of the HPV vaccination [14]. Media coverage of the campaigns and the

34 http://bmjopen.bmj.com/ connection to Michael Douglas’ disclosure has the opportunity to raise awareness among parents and 35 36 as all the articles took a positive stance towards vaccinating boys, this may influence parents’ 37 38 decisions about vaccinating their sons against HPV. Including endorsements from leading 39 40 researchers in the field of HPV and oral cancer may have enhanced the credibility of messages in the 41

42 articles and encourage parents to vaccinate their boys should they have the opportunity. Parents of on September 24, 2021 by guest. Protected copyright. 43 44 boys will need to be able to communicate to their sons the link between HPV and sex, given that the 45 46 vaccine is currently positioned as the ‘cervical cancer vaccine’. The media could play a role in 47 facilitating this. 48 49 50 This study is limited to UK publications and to print and online media, with broadcasts on television 51 52 not examined and so the results may not be representative of wider information available to the 53 54 public. Different content may have been presented in television broadcasts which have not been 55 56 picked up in this study. The articles in the study were only examined for content and not for accuracy 57 of the information presented as this was not an aim of the study. 58 59 60 17 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 18 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Examining responses to articles presenting the link between HPV and oral cancer through analysis of 4 5 the discourse of online comments made on these articles would be an interesting area for future 6 7 research. Coding the frequency of the stories in each article may also be useful to do in the future to 8 understand which stories gain traction in the media. Assessing public knowledge about the link 9 10 between HPV and oral cancer would also be useful, and an important first step towards raising public 11 12 awareness and designing appropriate information for patients diagnosed with the disease. 13 14 15 In conclusion,For this study is thepeer first to show thatreview the link between HPV only and oral cancer has received 16 17 coverage in the UK media, but an opportunity was missed to educate the public and influence health 18 behaviours, through the disclosure of Michael Douglas. It is important for researchers not only to 19 20 monitor media coverage of the link, but to work with journalists to ensure the content of articles is 21 22 accurate and appropriate. Transmission of HPV via oral sex was regularly discussed along with the 23 24 link between HPV and oral cancer, which could raise public anxieties about oral sex. It is therefore 25 26 important for journalists to aim to minimise stigma and blame associated with these messages, 27 28 normalising HPV and portraying it as associated with normal sexual behaviour. 29 30 Contributors 31 32 33 RD, LM and JW conceived of the study and participated in the design. RD participated in the

34 http://bmjopen.bmj.com/ 35 acquisition, analysis and interpretation of the data and drafting of the manuscript. AF also participated 36 37 in the analysis and interpretation of the data. All the authors participated in the critical revision of the 38 39 manuscript and approved the final version. 40 41 Funding

42 on September 24, 2021 by guest. Protected copyright. 43 44 Rachael Dodd is funded by a Medical Research Council Studentship. 45 46 47 Competing interests 48 49 None 50 51 52 Data sharing 53 54 55 No additional data are available. 56 57 58 59 60 18 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 19 of 23 BMJ Open BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

1 2 3 Figure legends 4 5 6 Figure 1: The number of UK media articles reporting on the link between oral cancer and HPV from 7 2001-2014 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33

34 http://bmjopen.bmj.com/ 35 36 37 38 39 40 41

42 on September 24, 2021 by guest. Protected copyright. 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 19 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 20 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

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42 28 Fishbein M, Yzer M. Using theory to design effective health behavior interventions. Commun on September 24, 2021 by guest. Protected copyright. 43 Theory 2003;13:164–83. doi:10.1111/j.1468-2885.2003.tb00287.x. 44 45 29 Cancer Research UK. Be Clear on Cancer evaluation update 2014:1–10. 46 http://www.cancerresearchuk.org/sites/default/files/evaluation_results_2014.pdf (accessed 47 November 9 2015) 48 49 30 Newsworks. Newsbrands 2015. http://www.newsworks.org.uk/Market-Overview (accessed 50 November 9, 2015). 51 52 31 Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, 53 Burgess R, eds. Analysing Qualitative Data. London: Routledge 1994. 173–94. 54 55 32 Johnson JQ, Sionean CS, Scott AM. Exploring the Presentation of News Information About the 56 HPV Vaccine: A Content Analysis of a Representative Sample of U.S. Newspaper Articles. 57 Health Commun 2011;26:491–501.10.1080/10410236.2011.556080 58 59 60 21 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open Page 22 of 23 BMJ Open: first published as 10.1136/bmjopen-2015-008740 on 26 February 2016. Downloaded from

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1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 For peer review only 16 17 18 19 20 21 22 23 Figure 1: The number of UK media articles reporting on the link between oral cancer and HPV from 2001- 24 2014 25 340x162mm (300 x 300 DPI) 26 27 28 29 30 31 32 33

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42 on September 24, 2021 by guest. Protected copyright. 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml