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    Putting screening non-attendance under the microscope – understanding why some women don’t go for smear tests

    By Jo Waller, on 26 April 2016

    Authors: Amanda Chorley and Jo Waller

    If you are a woman aged 25 or over, there is a good chance you have attended cervical screening (the smear or Pap test) at least once. In England last year, just under three quarters of women were ‘up to date’ with cervical screening [1], meaning that over a quarter of women are not up to date. As cervical screening, in addition to HPV vaccination, is one of the best ways to protect yourself from cervical cancer it is important to understand why some women do not attend.

    microscope-275984_960_720

    Many studies have asked women about their feelings towards and experiences of cervical screening. We carried out a review of studies [2] from the UK, Australia, Sweden and South Korea – countries where women are automatically invited for screening on a regular basis.

    By pulling together findings from across 39 studies, we identified two main themes. Firstly women considered whether they should go for screening – were they at risk of cervical cancer? How serious was the outcome? And is screening a useful way of dealing with that threat? Secondly, women who had previously been for screening recounted their experiences, and how this made them feel about going again.

    Should I go for screening?
    In deciding whether they should go for cervical screening or not, women considered whether they were at risk of cervical cancer, and therefore if screening was relevant to them. Their decisions were often based on ideas of the causes of cervical cancer, such as number of sexual partners. Women also considered their current life stage (both biological such as menopause, and social such as being the mother of young children), and their family history of cervical (and other) cancer.

    Women differed in whether they thought cervical screening was worthwhile. Some talked about the benefits of early detection of cancer (e.g. better survival or ‘peace of mind’). Others believed that they would know if they had an illness as serious as cancer, without screening, or were cynical about the motives of screening programmes. The final group were aware of screening, but were unsure of its importance. These women were often from more deprived backgrounds, or were from ethnic minority groups.

    Screening is a big deal
    It was clear from women’s accounts that one bad experience of screening could make them avoid screening in the future. However it is important to remember that it is possible that women who have had bad experiences are perhaps more likely to take part in studies about screening than women who do not view screening as a big deal.

    Some women found the prospect of screening threatening, either through the risk of being given a diagnosis of cervical cancer, the belief that you might get an infection from unclean instruments, or through the anxiety screening and the wait for results could cause. Some women reported a different kind of threat. It was believed that a positive result could mark you as “promiscuous”, and for some women (especially those from ethnic minority groups) simply attending screening could suggest to other people that you were sexually active.

    Cervical screening was also seen as a big deal because of physical aspects, such as pain, or disliking the speculum. For others emotional aspects were more important. In particular, some women reported feelings of embarrassment, shame, and a loss of control during screening, due to the unusual situation in which you are expected to expose your genitals to a relative stranger.

    Because of this, women across studies had a strong preference for female nurse or doctor for cervical screening.

    Other factors
    These are not the only reasons women do not attend screening. Some women talked about how they would like to go for screening, but competing priorities, such as childcare and work, or inconvenient appointment times or clinic locations meant that they could not easily attend. Women from ethnic minority groups also reported specific problems, such as racist treatment from health professionals, and difficulty in accessing information about screening due to a lack of translated material.

    What does this mean?
    Our findings show that women are not all alike in their reasons for not attending screening. Some do not think screening is relevant for them and have made a conscious decision not to go. Others have had a bad experience and wish to avoid that happening again. Yet other women would like to attend screening, but life gets in the way. And of course cervical screening is not a one-off event. Women will continue to be invited over a period of decades, and factors that were important at one stage of a woman’s life may be more or less important in the future.

    Knowing this allows us to develop different kinds of information and support for women depending on which factors are most important to them. We are now also able to carry out further research to try and find out whether certain factors are more likely to be considered important by certain groups of women. Our review also made it clear that the opinions of women who have never attended, or even heard of screening, have hardly been explored. We hope to interview women from these groups in the coming months, and find out more about their barriers to cervical screening.

    [1] Screening and Immunisations team HaSCIC. Cervical Screening Programme, England. Statistics for 2014-15. 2015.

    [2] Chorley AJ, Marlow LAV, Forster AS, Haddrell JB, Waller J. Experiences of cervical screening and barriers to participation in the context of an organised programme: a systematic review and thematic synthesis. Psycho-Oncol. 2016.

    Can the internet help the public understand ‘overdiagnosis’ in breast cancer screening?

    By Alex Ghanouni, on 20 April 2016

    Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

    In our last blog, we talked about ‘overdiagnosis’, a concept that many people are unfamiliar with – that is, when a medical test finds an illness that would never have caused any harm during a person’s lifetime.

    As a follow-up study, we were interested in how much information the UK and Australian public could find online about overdiagnosis in the specific context of breast cancer screening.

    Why breast cancer screening?

    We chose breast screening because it is a setting in which the issue of overdiagnosis has received a lot of attention in the UK in recent years: in 2011, Cancer Research UK and the Department of Health commissioned a review of studies with the aim of understanding how much overdiagnosis happens in breast screening.

    Likewise, the NHS recently made substantial changes to the information leaflets provided to women invited for breast screening, with the aim of ensuring that they would understand that overdiagnosis was one possible outcome of being tested.

    Breast screening sometimes diagnoses ‘ductal carcinoma in situ’ or ‘DCIS’, which is an abnormality that can become a symptomatic cancer over time. However, it can also be slow growing and never pose a health risk, meaning that a large proportion of overdiagnosis in breast screening is due to DCIS.

    As well as finding out what kind of information people could find about overdiagnosis on health websites, we were interested in what explanations those websites provided about DCIS, and also what kinds of statistics were used to give the public a sense of how many people are affected by overdiagnosis.

    We used a Google search for ‘breast cancer screening’ to find the most relevant health websites in the UK and Australia (such as NHS Choices and Cancer Australia). We examined in detail ten websites from the UK and eight from Australia.

    What did we find?

    Our main findings were that most UK websites included some information about overdiagnosis and also DCIS. The websites provided a range of statistics stating, for example, that every year around 4,000 women in the UK are overdiagnosed and overtreated following screening and that around 3 in 200 women screened would be overdiagnosed and overtreated (considering women aged between 50 and 70 years undergoing screening every three years).

    Such information was available less often on Australian websites, although the kind of information was similar when it was present (and several websites linked to more detailed websites instead of hosting the information themselves).

    Why is this important?

    One reason for doing this research was that a similar study had been carried out more than ten years ago in 2000, showing that overdiagnosis and DCIS were rarely described. We thought that things might have changed in the meantime as more and more people use the internet to understand health issues.

    In fact, we found that although not every piece of information on overdiagnosis and DCIS is available on every website, it is more available than it was in the past. In time, this might lead to a greater level of public awareness about the issue.

    What does the UK public understand by the term ‘overdiagnosis’?

    By Alex Ghanouni, on 14 April 2016

    Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

    In recent years, doctors and academics have become more and more interested in a problem referred to as ‘overdiagnosis’. There are several ways that overdiagnosis can be defined.

    One particularly useful way is to think of it as the diagnosis of a disease that would never have caused a person symptoms or led to their death, whether or not it had been found through a medical test. In other words, even if a person had not had the test, the disease would never have caused them any harm.

    Catching it early

    It may not be obvious how this can happen. As an example, imagine a woman going for breast screening, which tries to find cancer at an early stage, before it starts causing symptoms.

    The thinking behind this type of test is that if the disease is found early, it will be easier to treat and there is a higher chance of curing it. Most people are familiar with this idea that ‘catching it early’ is a good thing.

    So, suppose a woman who has no symptoms goes for screening and the test finds cancer: she would usually go on to have treatment (e.g. surgery).

    However, although she has no way of knowing for sure, it is possible that the cancer was growing so slowly that she would have lived into old age and died of something unrelated, without ever knowing about the cancer, had she not gone for screening.

    The cancer is real but the diagnosis does not benefit the woman at all; it results in treatment that she did not need (‘overtreatment’). In fact, if she had not had the screening test, she would have avoided all the problems that come with a cancer diagnosis and treatment.

    What research has found

    If you find the idea of overdiagnosis counter-intuitive, you are not alone. Several studies have tried to gauge public opinion on the issue and found that this is a fairly typical view, partly because the notion that some illnesses (like cancer) might never cause symptoms or death is one that does not receive much attention and is often at odds with our personal experiences.

    Results from an Australian study in 2015 found that awareness of ‘overdiagnosis’ is low – in a study of 500 adults who were asked what they thought it meant, only four out of ten people gave a description of the term that was considered approximately correct and these descriptions were often inaccurate to varying degrees.

    For example, people often thought in terms of a ‘false positive’ diagnosis (diagnosing someone with one illness when really they do not have that illness at all), or giving a person ‘too many’ diagnoses.
    Is this the same in the UK?

    We wanted to find out whether this was also true in the UK. We asked a group of 390 adults whether they had come across the term ‘overdiagnosis’ before and asked them to describe what they thought it meant in their own words, as part of an online survey.

    We found that only a minority (three out of ten people) had encountered the term and almost no-one (10 people out of all 390) described it in a way that we thought closely resembled the concept described above.

    It was not always clear how best to summarize people’s descriptions but we found that people often stated that they had no knowledge or had similar conceptions to the Australian survey such as ‘false positives’ and ‘too many’ diagnoses.

    Some descriptions were somewhat closer to the concept of overdiagnosis such as an ‘overly negative or complicated’ diagnosis (e.g. where the severity of an illness is overstated) but there were also some descriptions that we found more surprising such as being overly health-conscious (e.g. worrying too much about health issues).

    Room for improvement

    Many people who work in public health and healthcare believe that people should be aware of the possibility of overdiagnosis, particularly since they will eventually be offered screening tests in which there is this risk.

    In this respect, our findings show that there is substantial room for improvement in how we inform the public about overdiagnosis. In part, this may be due to the term itself not having an intuitive meaning, in which case other terms might be more helpful (for example the term ‘unnecessary detection’).

    This could be tested in future studies. Our findings also motivated us to find out the extent to which trusted information sources (such as websites run by the NHS and leading health charities) are already providing information on overdiagnosis.

    We would like to share the findings from this study in a follow-up blog post. We will be posting this here soon.

    This was originally posted on the BioMed Central blog network.

    Reviewing what we know: the psychological impact of HPV and oral cancer

    By Rachael Dodd, on 21 March 2016

    Human papillomavirus, or HPV as it’s more commonly known, is an infection that most sexually active people will get in their lifetime. We know that the high-risk types of HPV (e.g. HPV-16 and HPV-18) are often sexually transmitted and in some cases, albeit very few, it can lead to cancer if our bodies don’t get rid of it. It’s probably most well known as the cause of cervical cancer, as the HPV vaccination was introduced in 2008 and is available to all girls aged 12-13. But it has also been shown to cause other cancers, such as oral cancer, penile cancer and anal cancer.

    When HPV was increasingly found to be the cause of cervical cancer, researchers looked into the psychological impact this could have on women being given this information. Research carried out with women taking part in HPV testing at cervical cancer screening has shown that the sexually transmitted nature of HPV can lead to women feeling stigma, anxiety, concern about their relationships and worry about telling others about their test result. Some women also reported a reduction in sexual enjoyment and frequency of sex. Because of the additional challenges faced by women with cervical HPV, people now recognise a need for some guidance on how best to discuss HPV with oral cancer patients.

    Patients with HPV-related oral cancer are typically younger than those whose oral cancer has been caused by tobacco or alcohol. They tend to be white, male, married, educated and employed. The risk of getting a HPV-related oral cancer is higher if individuals have had a greater lifetime number of sexual and oral sex partners, due to greater exposure to HPV.

    Unsurprisingly, research shows that a diagnosis of head and neck cancer causes psychological distress. Telling patients that they also have HPV could make them worry even more. We wanted to see what studies have been done in this area and what they have found.

    We searched all the available literature to look at the psychological impact of being diagnosed with HPV-related oral cancer. In essence, there wasn’t much research out there. Ten research papers had looked at the psychological impact of being diagnosed with an HPV-related oral cancer. Seven of these measured quality of life (a patient’s ability to enjoy normal life activities) and they had varying results. Some research studies found that patients with HPV-related oral cancer had better quality of life than those diagnosed due to tobacco or alcohol, or that there was no difference between the two groups of patients. In one study which interviewed survivors, some patients felt stigma or shame associated with their diagnosis, because of the sexually transmitted nature of HPV.

    We also looked at what different groups of people know about HPV and oral cancer, which varied considerably. As you would expect, knowledge was higher among medical professionals than members of the public. Knowledge was also higher among students who were studying medicine or dentistry than students who were not studying these subjects.

    So far, there haven’t been many studies looking at the psychosocial impact of a diagnosis of HPV-related oral cancer and many people in the general public do not know about the link between HPV and oral cancer. The research studies looking at the psychological impact of HPV-related oral cancer, looked at this in patients, but this has led to further research being conducted with health professionals, patients and their partners. This research has explored their experiences of diagnosing/being diagnosed with HPV-related oral cancer, as well as the psychological impact of a diagnosis of HPV-related oral cancer.

    Article link:

    Dodd RH, Waller J, Marlow LAV. Human Papillomavirus and Head and Neck Cancer: Psychosocial Impact in Patients and Knowledge of the Link – A Systematic Review. Clinical Oncology 2016. http://dx.doi.org/10.1016/j.clon.2016.02.012

    Making the headlines: HPV and oral cancer

    By Rachael Dodd, on 7 March 2016

    Many people are now quite familiar with the idea that a common virus – HPV or human papillomavirus – is linked with cervical cancer. Girls in school Year 8 are offered a vaccine to protect against it, and women are sometimes tested for HPV in the context of cervical screening. But fewer people know that HPV is also linked with oral cancer. In 2013, Michael Douglas talked to the media about the link between HPV and oral cancer in the context of his own diagnosis, and we were interested to see if this was used as an opportunity to raise public awareness of the link.

    We know that media coverage can influence public awareness and perceptions about cancer. People have been shown to be more interested in disease prevention following a celebrity diagnosis. In the UK, the case of reality TV star Jade Goody (who died of cervical cancer in 2009) was associated with an increase in the number of women attending cervical screening. The NHS Be Clear on Cancer media campaigns have also been shown to be effective in increasing awareness of key symptoms for cancers and with more people seeking help from their GP.

    Michael Douglas was interviewed by The Guardian in June 2013, and stated that his throat cancer was ‘caused by HPV which actually comes about by cunnilingus’. This statement was later retracted by his publicist, but not before it had received global media attention. This provided the media with a prime opportunity to discuss the link between HPV and oral cancer. But just what was discussed?

    In our research paper we looked at UK newspaper articles mentioning HPV and oral cancer and found that there had been some coverage of the link going back as far as 2001, but there was a large peak in articles following Michael Douglas’ disclosure in June 2013. When we looked at the content of these articles, we found they covered Michael Douglas’ disclosure, some questioned if oral sex is risky and others discussed the vaccination of boys and general information about HPV.

    Taking their cue from Douglas’ statement, a large number of articles mentioned oral sex as a cause of mouth cancer, with some reflecting on why HPV-related oral cancer might be twice as common in men as in women. An increase in the number of people having oral sex was suggested as a reason for the growing numbers of HPV-related oral cancers. It was also acknowledged that oral sex is a topic which could not have been discussed openly even recently.

    Although most of the articles included some information around HPV and oral cancer, this often wasn’t detailed. Some articles communicated that the incidence of oral cancer is increasing, but less than 20 per cent of the articles communicated the important messages that 8/10 people will contract HPV in their lifetime and that HPV-related oral cancer has a better prognosis and survival.

    There were also calls for boys to be vaccinated against HPV, as oral cancer affects both men and women. Campaigners believe giving boys the vaccination will help stop the ‘catastrophic rise’ in cancers. Some also viewed it as unethical to give the vaccination to girls and not to boys.

    The UK media did regularly discuss HPV and oral cancer and the transmission of HPV via oral sex, but detailed information about HPV was generally lacking. Important messages to remember and communicate to others are that HPV is common, it is a result of normal sexual behaviour, and it has a better prognosis than oral cancers caused by smoking and alcohol.

    Article link:

    Dodd RH, Marlow LAV, Forster AS, Waller J. Print and online newspaper coverage of the link between HPV and oral cancer in the UK: a mixed-methods study. BMJ Open. 2016; 6:e008740.

    http://bmjopen.bmj.com/content/6/2/e008740.full?keytype=ref&ijkey=a1QD2l1zZXkM6GX

    Ethnic minority women more fatalistic about cancer

    By Charlotte Vrinten, on 2 March 2016

    This blog was originally posted on the BioMed Central blogs network.

    Cancer fear and fatalism may cost people their lives if it causes them to avoid cancer screening or seeing their doctor with symptoms.  A new study from the Health Behaviour Research Centre, published today in the British Journal of Cancer, shows that cancer fear and fatalism may be more prevalent among ethnic minority groups, which could help explain their lower engagement with early detection of cancer.

    Earlier studies from the HBRC have looked at different aspects of cancer fear and how they affect willingness to attend cancer screening [1,2].  For example, in a study about colorectal cancer screening, we showed that worrying about cancer increased intention to be screened, but feeling uncomfortable at the thought of cancer made people less likely to attend screening [1].

    In a different analysis of the same sample, we showed that those from an ethnic minority background were more likely to worry about cancer and feel uncomfortable thinking about cancer [3].  However, the number of people from an ethnic minority background in these studies was very small (4%), so we could not look at differences in cancer fear between different ethnic groups.

    We have now extended these findings in a study which was published in the British Journal of Cancer today [4].  In this study, we compared levels of cancer fear and fatalism across 720 women from White British, Caribbean, African, Indian, Pakistani and Bangladeshi backgrounds, and examined where these differences may come from.  The study was part of a larger study on cervical cancer screening in women from ethnic minority backgrounds [5].

    Our findings confirm that cancer fear is still very prevalent: about a quarter of all women feared cancer more than other diseases, or felt uncomfortable at the thought of it.  And about one in five women said they worried a lot about cancer.  There were few differences between the ethnicities, although Indian and African women seemed a bit more afraid of cancer (33%), and Bangladeshi women a little less (15%) on some indicators of fear.

    Apart from cancer fear, we also looked at cancer fatalism, which was defined as a belief that cancer is predetermined and that it is incurable.  Here, some striking differences were found between the ethnic groups: almost a quarter of Caribbean women (23%), and more than half of Indian, Pakistani, and Bangladeshi women (50, 52, and 63%, respectively) believed that a diagnosis of cancer was down to fate, compared with only 6% of White British women.  In addition, a quarter to over a third (26-38%) of women from an ethnic minority background thought that cancer was incurable, but no White British women did.

    We explored whether these fearful and fatalistic attitudes among women from ethnic minority backgrounds could be explained by level of acculturation and the belief that events in life are generally predetermined.  We found that not speaking English very well or having difficulty understanding health-related information was associated with being more likely to feel uncomfortable about cancer and believing that a diagnosis of cancer is predetermined.  However, these characteristics were also associated with being less likely to worry about cancer or fearing cancer more than other diseases.  Perhaps unsurprisingly, we also found that a belief that events in life are generally predetermined was associated with the belief that a diagnosis is predetermined, too.

    Our study is one of the first studies to explore cancer fear and fatalism in different ethnic minority groups in the UK.  Our findings show that cancer worry is still pervasive in the UK, with no stark differences between ethnic groups, but fatalistic beliefs about cancer seem much more prevalent among those from an ethnic minority background.  These findings may help explain why women from ethnic minority backgrounds are less likely to attend cancer screening or to go to their doctor with symptoms [5].  Our findings also have implications for public health campaigns.  For example, those who do not speak English very well were more fatalistic and uncomfortable about cancer, suggesting that messages of increased survival may not reach these groups.

    Further research should address the link between cancer fear and fatalism among different ethnic groups, and engagement with cancer early diagnosis directly, to help inform more targeted public health campaigns.

    Charlotte discussed the findings of this study with DJ Nihal in his radio show on the BBC Asian Network on 7 March 2016, where it formed the starting point for an open discussion about cancer, fate, and stigma in the Asian community (from 1:12 onwards).

    References

    [1] Vrinten C, Waller J, von Wagner C, & Wardle J. (2015). Cancer fear: facilitator and deterrent to participation in colorectal cancer screening. Cancer Epidemiology Biomarkers & Prevention, 24(2), 400-405.

    [2] Beeken RJ, Simon AE, von Wagner C, Whitaker KL, & Wardle J. (2011). Cancer fatalism: deterring early presentation and increasing social inequalities? Cancer Epidemiology Biomarkers & Prevention, 20(10), 2127-2131.

    [3] Vrinten C, van Jaarsveld CH, Waller J, von Wagner C, & Wardle J. (2014). The structure and demographic correlates of cancer fear. BMC Cancer, 14, 597-605.

    [4] Vrinten C, Wardle J, & Marlow LA. (2016). Cancer fear and fatalism among ethnic minority women in the United Kingdom. British Journal of Cancer. Advance online publication 11 February 2016; doi: 10.1038/bjc.2016.15

    [5] Marlow LAV, Wardle J, & Waller J. (2015). Understanding cervical screening non-attendance among ethnic minority women in England. British Journal of Cancer, 113(5), 833-839.

    Remembering Professor Jane Wardle – Part 5 – Ten Top Tips

    By Alice S Forster, on 24 January 2016

    In the fifth and final post in our series remembering Professor Jane Wardle and some of the contributions she has made to the field of behavioural science, Dr Becca Beeken writes about Jane’s work on the Ten Top Tips and habits.

    Novel approaches to weight management

    As part of Jane’s pioneering work on obesity, she developed novel, evidence-based methods for weight control. Jane recognised that there was a real need for weight loss advice for the general public that is easy to communicate, straightforward to follow, and applicable across a variety of lifestyles. She also acknowledged that while most weight management programmes talk about ‘habits’, they often just mean things we do all the time, and it’s usually in the context of breaking bad habits. Jane was one of the first behavioural scientists to explore whether we can teach people to form healthy habits, using habit formation theory.

    According to psychological theory, habits are (relatively) automatically triggered actions that are formed through repetition in a consistent context, which makes them more and more automatic. Jane and one of her PhD students, Pippa Lally, asked people to pick a simple healthy behaviour, such as doing 50 sit ups, and then instructed them to repeat it in a consistent context (e.g. after their morning coffee). They showed that as time went on, individuals performed the behaviour more often, and they also reported that it felt more automatic- it was becoming a habit. Based on this study, Jane worked with the charities Cancer Research UK and Weight Concern to develop the Ten Top Tips.

    The Ten Top Tips is a simple leaflet, which describes a set of ten simple energy balance behaviours that can be turned into habits. The leaflet explains the habit model and how to repeat the behaviours in a consistent context. Jane believed that this kind of intervention, which requires very little time to explain and is easy to understand, may be beneficial in primary care where time is short and effective advice for weight management is needed. Weight management advice that promotes permanent behaviour change is particularly important, because not only is losing weight very difficult, keeping the weight off is notoriously hard. Jane felt the Ten Top Tips could meet this need through helping people to make small changes that would become automatic over the longer term.

    Jane led a large randomised controlled trial in obese adults in primary care (GP practices), across England, comparing weight loss in patients receiving the Ten Top Tips vs. ‘usual care’. This was the first time an intervention explicitly based on habit-formation theory had been delivered in the primary care context, and importantly the first evaluation of a simple weight loss advice leaflet. Jane and her team found that that the Ten Top Tips led to significantly more weight loss over 3 months than usual care, with 16% of patients achieving at least 5% weight loss; twice as many as in the usual care arm (8%). At 2 years over a quarter (27%) of patients who received the Ten Tops Tips had achieved at least 5% weight loss, suggesting patients maintained the changes made to their behaviours in the first few months after receiving the Ten Top Tips; they had become ‘habits’.

    Jane’s work on the development and evaluation of the Ten Top Tips represents an important milestone for translational behavioural research. The Ten Top Tips could offer a low cost option for weight management in primary care and it has already been widely disseminated across the UK as part of Cancer Research UK’s Reduce the Risk campaign, which aims to raise the awareness of the avoidable risks of cancer. Her research group are continuing to take this important work forward, with new studies exploring the effectiveness of habit based advice for cancer survivors-‘Heathy Habits for Life’, and adapting the Ten Top Tips for families with overweight children-‘Tips for Tots’.

    EB_2_IMG_5563

    Remembering Professor Jane Wardle – Part 4 – Fear of cancer

    By Alice S Forster, on 17 January 2016

    In the fourth post in our series on the contribution that Professor Jane Wardle made to the field of cancer behavioural science, Charlotte Vrinten and Sammy Quaife write about fear of cancer and how it affects cancer prevention.

    Jane and cancer fear

    As a cancer patient, Jane had first-hand experience of the emotional reactions that may follow a cancer diagnosis.  In her article in the Guardian, she described the shock of learning of her diagnosis, which was followed by ‘every variation of denial’, sadness and depression, and fear of the ‘abyss that she had seen’.  As someone who ‘had a foot in both camps’, she realised that this emotional reaction to cancer not only affects cancer patients, but also exerts its influence on the general population.  Crucial to Jane’s work as a psychological researcher into the prevention of cancer, she understood that the fear of being diagnosed with cancer keeps many from engaging with cancer screening or early detection.  Cancer is not generally a club you want to be a member of.

    Her work showed that although much progress has been made in the treatment of cancer, it is still a widely feared disease.  Her studies of population-based samples showed that 50-70% of adults are scared of cancer, and about a quarter worry a lot about cancer (McCaffery, Wardle, Waller, Prev Med, 2003; Vrinten et al, BMC Cancer, 2014).  They also identified women and those who are younger, with less education, or from ethnic minority backgrounds as subgroups that are particularly afraid of cancer – a finding which may help explain differences in help-seeking for cancer symptoms or uptake of cancer screening.

    As a Behavioural Scientist, Jane sought to understand how cancer fear may affect early detection behaviour, and this took centre-stage in her research on this topic.  Her findings suggest that while a little fear or worry may motivate people to attend cancer screening, high levels may deter them; both from flexible sigmoidoscopy and FOBt screening.  The addition of fatalistic beliefs to cancer fear seem to exacerbate this effect, leading to delays in seeking help for possible cancer symptoms, and avoidance of information about cancer, which may perpetuate these negative feelings and views.  More recently, Jane extended this work to lung cancer, in an ongoing programme of work exploring the psychosocial deterrents to screening among smokers from socioeconomically deprived communities, and trialling a targeted invitation strategy which aims to minimise fear, fatalism and stigma.

    One of Jane’s recent qualitative studies revealed that many people seem to be ‘in two minds’ about cancer; first expressing fear and thoughts of death, but then acknowledging (often in the same sentence) improvements in cancer treatment, survival and quality of life.  Her population-based study supported this co-existence of positive and negative cancer beliefs, particularly among individuals with lower levels of education.  Messages of improved outcomes and survival seem to be sinking in, but many people’s gut feeling about cancer remains one of dread.

    Public campaigns tend to focus on increasing public fear about cancer – for example by emphasising how common cancer is or how deadly some types of cancer are.  But Jane recognised that worrying about cancer can impair quality of life, and feeling afraid of cancer can cost a person their life if it puts them off going for screening or getting medical help for symptoms.  Having faced the abyss herself, Jane was committed to helping people understand that there is a lot that they can do to lower their risk of cancer, that cancer outcomes are continually improving, and that there is no need for it to be the great dread it used to be.

    Remembering Professor Jane Wardle – Part 3 – Psychological and behavioural implications of the link between HPV and cancer

    By Alice S Forster, on 10 January 2016

    This third post in our series on the contribution that Professor Jane Wardle made to cancer behavioural science discusses the human papillomavirus (HPV or cervical cancer) vaccine and HPV testing written by Dr Alice Forster and Dr Jo Waller.

    In 1976, Harald zur Hausen discovered that human papillomavirus (HPV) plays an essential causal role in the development of cervical cancer (he later won the Nobel prize in Physiology or Medicine in 2008 for this work). HPV can also cause cancers of the vagina, vulva, penis, anus and mouth and throat and is transmitted by skin to skin contact (usually sexual contact with cervical cancer). zur Hausen’s discovery made possible the development of technology to test for HPV, and this test is now used in the NHS cervical screening programme. Jane and colleagues realised that testing for a sexually transmitted infection in the cancer screening context might cause some women confusion and anxiety. They conducted work exploring the psychological impact of women testing positive for HPV, finding raised concerns about fidelity and blame and increased anxiety and distress. The work had implications for the kind of information women are given about HPV when they take part in screening.

    Another implication of zur Hausen’s discovery was the development in the late 1990s and early 2000s of vaccines that protect against the two types of HPV that cause most cervical cancers. Jane recognised, based on her work on HPV testing, that vaccinating young girls against HPV, a sexually transmitted infection, could be controversial for some and sought to understand the potential acceptability of HPV vaccines.

    One of Jane’s key studies in this area was conducted in 2005 before the HPV vaccine was licensed. The study aimed to explore mothers’ responses to information about the HPV vaccine. Jane and colleagues conducted a focus group study with 24 mothers of 8 to 14 year old daughters. The study found that most mothers were keen to prevent their daughters from developing cervical cancer, but they also had reservations about the safety and possible side-effects of the vaccine. Many mothers wanted to talk to their daughter about the vaccine and felt that this would be difficult if the vaccine was given to young children. Some felt that girls younger than 10 or 11 would not have had much, if any sex education and so discussing a sexually transmitted infection with them would be tricky. Others did not want to think about their daughter being sexually active and for this reason felt that they could not consider giving the vaccine to a 9 year old.

    “They’re innocent at 9. They don’t do things like that.”

     “It’s not thinkable is it, your 9-year-old doing anything like that?”

    Parents also expressed fear that HPV vaccination might be seen by girls as consent to be sexually active or fear that girls would misinterpret HPV vaccination as protection against sexually transmitted infections in general. Earlier work conducted by Jane and colleagues suggested that around a quarter of mothers and girls themselves believed that girls would be more likely to have sex or unprotected sex following HPV vaccination. However, reassuringly, in the first longitudinal study to look at whether girls’ sexual behaviour changed following HPV vaccination, we were able to show that vaccinated girls were no more likely to have become sexually active after vaccination (compared to girls who did not get the vaccine), to have increased their number of sexual partners or to have changed how consistently they used condoms.

    At the time of Jane’s initial research in this area, she and her team were one of only a handful of research groups internationally who were investigating the behavioural side of HPV vaccination and testing. Today, researchers across the world are applying behavioural science to understand how to maximise uptake of HPV vaccination in their own countries and to minimise the negative psychological consequences, and maximise the acceptability, of HPV testing. The work in our group continues, with projects aimed at understanding ethnic differences in uptake of HPV vaccination, exploring the psychological impact of primary HPV testing, and examining psychological responses to an HPV diagnosis in patients with head and neck cancer.

    Jane’s work paved the way for the introduction of the HPV vaccine in the UK in 2008, by helping immunisation programme coordinators anticipate its acceptability among parents. Jane’s finding that the HPV vaccine might not be acceptable to mothers if it were offered to girls younger than 11 informed the UK government’s decision to recommend the vaccine for 12 and 13 year olds. Today, almost 90% of 12 and 13 year old girls in England get the HPV vaccine, and with it protection against HPV-related cancers.

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    Why some girls don’t get the HPV vaccine and why others don’t get all doses

    By Alice S Forster, on 6 January 2016

    Girls in year 8 in the UK (aged 12 and 13) are offered a vaccine that protects against human papillomavirus or HPV. While HPV is very common, in some people it can cause cancers of the cervix, mouth and throat, vulva, vagina, penis and anus. The vaccine protecting against HPV was originally given in three doses when the immunisation programme first started, however it is now given in two doses over at least six months. Most girls in England get the HPV vaccine (around 87% of them), but as we’ve written before, uptake of the vaccine is lower among girls from Black and Asian Minority Ethnic backgrounds. We also know that more girls get the first dose of the vaccine than complete the series. This is concerning as the vaccine works best if girls get all doses. However, we do not yet properly understand why some girls are not getting the vaccine and why some girls do not complete the series. With this information we can identify targets for information campaigns or wider policy changes that can help establish and maintain high coverage.

    In a study that was published at the end of last year, funded by Cancer Research UK, we spoke to girls who had been offered the HPV vaccine as part of the routine immunisation programme to find out why some girls had not got any doses of the HPV vaccine and why some had started, but not completed the series. The girls were recruited from 13 schools in London as part of a larger questionnaire study (some of the findings have been reported already here and here). Girls were asked if they had received the HPV vaccine and if they had, they were also asked how many doses they had received. We grouped girls as being unvaccinated (they had received no doses) or under-vaccinated (they had started the series, but had not finished it). They were then asked to explain why they were unvaccinated or under-vaccinated, and we categorised their responses using content analysis.

    There were 259 girls who were either unvaccinated (202 girls) or under-vaccinated (57 girls) who also gave us a reason to explain why this was the case. These girls came from a diverse range of ethnic backgrounds; around 31% were from White backgrounds, 29% from Black backgrounds and 20% from Asian backgrounds (around 20% were from an ethnic background other than White, Black or Asian, which were mainly mixed backgrounds, and 2% did not tell us their ethnicity).

    Reasons for being unvaccinated

    The most common reason that girls gave to explain why they had not had the HPV vaccine was that they did not have consent from their parents (41% of girls said this).

    “My mother didn’t want me to have it, even though I did” (Black Caribbean; self-reported ethnicity)

    Other common reasons included concerns about safety (reported by 25% of girls) and believing that they did not need the vaccine (19% said this).

    “My mum didn’t trust the vaccine because it was new” (Turkish).

    “Because I’m not going to have sex before marriage” (Pakistani)

    Reasons for being under-vaccinated

    Administrative problems were the most common reason that girls gave to explain why they had not finished the vaccine series (51% gave this as a reason), including being absent from school on the day of vaccination and some did not know that multiple doses were needed.

    “I never got round to having the 3rd one [dose] because I switched schools” (Indian).

    Health reasons, including girls believing that they had conditions which meant they should not complete the series (9%) and procedural issues, including fear of needles (5%), were also reported.

    “I hate needles” (Mixed White / Black Caribbean)

    “After the first vaccine I started to feel lighted headed” (Mixed White / Black Caribbean)

    Reasons given by girls from different ethnic backgrounds

    Compared to girls from other ethnic backgrounds, girls from White backgrounds were most likely to say that they were concerned about safety. Girls from Black and Asian backgrounds were most likely to say that they did not think that they needed the vaccine.

    Summary

    In this study we tried to find out the reasons why girls from a diverse range of ethnic backgrounds have not had the HPV vaccine or have not completed the series. Among girls who had not had the vaccine at all, concerns about the safety of the vaccine and believing that they did not need the vaccine were commonly reported. Girls who had not finished series said that they were absent from school when the vaccine was offered, did not know that multiple doses were needed and felt they had health issues that meant they should not have all doses. There was some suggestion that girls from White backgrounds were most commonly concerned about vaccine safety and that girls from Asian and Black backgrounds were most likely to believe that they did not need the vaccine. These findings can be used to tailor interventions to increase informed participation in the HPV vaccination programme among girls who are currently unvaccinated or do not complete the series. This will be the next step in one of our current programmes of work funded by Cancer Research UK.

    References

    Forster, A.S., Waller, J., Bowyer, H., Marlow, L. Girls’ explanations for being unvaccinated or under vaccinated against human papillomavirus: a content analysis of survey response. BMC Public Health. 2015;15:1278. doi 10.1186/s12889-015-2657-6