by Amanda Chorley and Jo Waller

Cancer screening programmes, such as breast, cervical, and bowel, are an important tool in the fight against cancer. Many people are aware of the value of early detection of cancer, which breast screening and the Faecal Occult Blood test (FOBt) part of bowel screening offer, which allows for treatment at an earlier stage when it is more likely to be effective. But are people aware that cervical screening and bowel scope screening (also known as flexible sigmoidoscopy, or FS) primarily aim to prevent cancer by identifying and removing abnormalities which may progress into cancer at a later date? This is the question we looked to answer in our recently published paper¹ in the Journal of Medical Screening.

As part of a larger survey on attitudes and behaviours surrounding cancer, we asked 1433 middle aged and older adults what they thought the main purpose of each of these screening programmes was. We found that while the majority of respondents were aware that breast screening (77.9%) and FOBt (73.2%) aimed to detect cancer early, only 17.6% knew that cervical screening primarily aimed to prevent cancer. For bowel scope screening the figure was only 13.8%. Overall only 13 people correctly identified the purpose of all four screening programmes, which is just under 1% of respondents.

We also looked at whether people had participated in each programme in the past to see whether that had any effect on awareness of the purpose of the programme. People who had been sent a test kit, and those who had completed and returned the kit were more likely to know that FOBt is designed to detect cancer early. For breast screening, only those having participated in screening were more likely to know that it was aimed at early detection. Having received an invitation did not seem to have an effect on knowledge of the purpose of the test.

However for both cervical screening and bowel scope screening neither those who had received an invitation nor those who had actually participated in the programme were any more likely to be aware of the preventive nature of the programme than respondents who hadn’t been invited or participated. This is despite the leaflets accompanying invitations clearly stating prevention as the main purpose.

On the one hand it is positive that public health messages on the importance of the early detection of cancer have been so effective, and that the majority of people recognise this to be the purpose of breast screening and FOBt. However, for people to make an informed choice about whether to participate in a screening programme they need an understanding about what the screening test aims to do, as well as any risks and benefits. Our survey suggests that this is not the case for cervical screening and bowel scope. As well as this lack of awareness being an issue for informed choice, it could also have consequences for how people engage with the screening programmes. People may end up avoiding screening tests if they are afraid they might be told they have cancer^{2, 3}. Knowing that some programmes can prevent cancer by finding and removing abnormalities may help to reduce these fears. Other studies have shown that women invited to colposcopy after having an abnormal result from their smear test sometimes mistakenly believe they have cancer^{4, 5}. A better awareness that cervical screening mainly looks for cell abnormalities which can be removed before they have a chance to turn into cancer may help in reducing stress and worry about the abnormal result.

If leaflets aren’t getting these messages across effectively, one of the priorities for the future will be finding different ways to communicate about cancer screening so that everyone understands what the tests are trying to do.

1. Chorley AJ, Hirst Y, Vrinten C, Wagner Cv, Wardle J and Waller J. Public understanding of the purpose of cancer screening: A population-based survey. J Med Screen. 2017; 0: 0969141317699440.
2. Vrinten C, Waller J, von Wagner C and Wardle J. Cancer fear: facilitator and deterrent to participation in colorectal cancer screening. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2015; 24: 400-5.
3. Andersen MR, Smith R, Meischke H, Bowen D and Urban N. Breast cancer worry and mammography use by women with and without a family history in a population-based sample. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2003; 12: 314-20.
4. Kavanagh AM and Broom DH. Women’s understanding of abnormal cervical smear test results: a qualitative interview study. BMJ (Clinical research ed). 1997; 314: 1388.
5. Gray NM, Sharp L, Cotton SC, et al. Psychological effects of a low-grade abnormal cervical smear test result: anxiety and associated factors. British journal of cancer. 2006; 94: 1253-62.

Cancer survivorship rates are improving dramatically, with half of all people diagnosed with cancer in the UK now expected to survive for at least ten years. Although treatment of the cancer is the primary clinical goal, ensuring the best possible quality of life after treatment is important. Preservation of sexual function is a key component of quality of life, yet remains a commonly reported ‘unmet need’ by cancer survivors. However, sexual function declines with ageing and because the majority of cancers are diagnosed in the over-70s, it was previously unclear whether changes in sexual wellbeing reported by cancer survivors are a result of their disease or a natural by-product of ageing.

In a new study published today in Cancer we explored differences in sexual activity, function and concerns between cancer survivors and people who had never received a cancer diagnosis. The findings revealed that a diagnosis of cancer does not seem to affect whether or not people have sex, how often they have sex, what they do when they have sex, and (in the case of men) their sexual function.  Compared with women of a similar age, women who had been diagnosed with cancer within the past five years were just as likely to be sexually active, although they were more likely to report problems with arousal.  Following the five years post-diagnosis the only difference was greater dissatisfaction with their sex lives, with 18% of women with a history of cancer reporting dissatisfaction compared to 12% of cancer-free women.  Male cancer survivors did not report any more sexual problems than their age-matched counterparts, but they were more dissatisfied with their sex lives (31% of men with cancer compared to 20% of men with no history of cancer).

The research involved 2982 men and 3708 women aged 50 years and older taking part in the English Longitudinal Study of Ageing (ELSA), a large population-based cohort of middle-aged and older adults living in England.  Participants reported whether they had ever been diagnosed with cancer, and completed the Sexual Relationships and Activities Questionnaire, a comprehensive measure that includes questions on the frequency of sexual behaviours, problems with sexual activities and function, and concerns and worries about sexual activities, function and relationships.  It is the first study to compare sexual behaviour and concerns between cancer survivors and controls from the same population-based study using a standardised measure.

The results of this study are generally encouraging in showing that older people with cancer do not experience greater problems with sexual activity or functioning than people of the same age without a history of cancer.  However, with more than one in five men and one in nine women reporting that they were dissatisfied with their sex lives, it is clear that there is a need to identify interventions to enhance sexual health in ageing men and women.  In the meantime, better advice on the normal changes in sexual activity and functioning that occur with ageing could help to address the mismatch between the normal sexual behaviour and lower sexual satisfaction seen in cancer survivors.

Article link:

Jackson SE, Wardle J, Steptoe A, Fisher A. Sexuality after a cancer diagnosis: a population-based study. Cancer. First published ahead of print 17 August 2016. doi:10.1002/cncr.30263

http://onlinelibrary.wiley.com/doi/10.1002/cncr.30263/full

We’ve written here before about the difficulty of recognising symptoms that could be signs of cancer, and knowing when it’s appropriate to go to the doctor about them. There’s lots of evidence that cancer is more treatable if it’s found at an earlier stage, but we know less about effective ways of encouraging people to seek help appropriately.

Encouraging people to seek help

Our new study tried to do just this. We focused on gynaecological cancers – that is ovarian, cervical, endometrial (womb/uterine), vaginal and vulval cancers which together affect over 20,000 women a year in the UK. We know from previous research that some of the things that stop people going to the doctor with symptoms are:

1) Not knowing that the symptom could be a sign of something serious
2) Worry about wasting the doctor’s time
3) Embarrassment about discussing or exposing intimate parts of the body
4) Worry about what the doctor might find

So we designed an information leaflet that addressed some of these issues. It provided details about possible symptoms of gynaecological cancer and a checklist to help women record their symptoms and make a plan to visit their GP. It reassured women that their doctor would be happy to see them, and that the symptoms were unlikely to be serious. It addressed the issue of embarrassment and reminded women they could ask to see a female doctor.

In this study , we used questionnaires to measure the impact of the leaflet in the short-term. We asked 464 women about their symptom knowledge, the things that might put them off going to the doctor if they had gynaecological symptoms, and how quickly they thought they would seek help for a range of symptoms. We also asked about how anxious they were feeling right now, so we could see if the leaflet raised anxiety levels. Women then spent some time reading the leaflet before filling in another questionnaire.

What did we find?

After reading the leaflet, most women said they would seek help more quickly if they noticed one of the symptoms. In particular, we reduced the number of women who said they would never seek help for vague symptoms like bloating and feeling full quickly, which can be signs of ovarian cancer. Women reported fewer barriers to visiting their GP, and greater knowledge about possible symptoms of gynaecological cancer. There was no evidence that the leaflet made women feel anxious.

What next?

These findings are very encouraging, and suggest that a leaflet may be an effective way of promoting prompt help-seeking for these symptoms. But it’s also important to remember that it was an experimental study – women read the leaflet under controlled conditions, so it doesn’t tell us what impact the leaflet would have in a real-world setting where women might be sent it in the post, or handed it at their GP surgery. Under these circumstances, they might not even read it.

In addition, we could only measure women’s anticipated help-seeking, and we can’t be sure what they would really do if they had these symptoms. Even when people intend to seek help, life often gets in the way, other things take priority, and people don’t get round to making an appointment.

The next step will be to see what happens when we actually send the leaflet to women – will more of them seek help and, ultimately, will more cancers be diagnosed at an earlier stage when treatment is more effective? We hope to answer these questions in our future work.

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.

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.

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.

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.

Have you ever searched for information about cancer? Chances are, if you have, it was a Google search that led to a website like WebMD, the Mayo Clinic, or a charity such as the American Cancer Society or Cancer Research UK. Research on cancer information seeking behaviour of the public tells us that most people first turn to the Internet, with more in-depth searching possibly extending to talks with friends, family, and health professionals. But who searches for cancer information? We already know that people in America who actively seek out information about cancer are most often well educated, have a high income, are under age 65, are white, and have a usual source of health care (1).

Currently, the global rise in cancer incidence has coincided with the technological revolution that sees internet and mobile usage increasing across the globe (2). As a result, searches for cancer information have increased among the public, but these increases are occurring disproportionately among people with higher levels of education and income (3). This trend indicates that social inequalities in health communications are widening, and will continue to do so. The outcome would be that people who are the best educated and most economically advantaged would have the best opportunities for access to, and use of, information about cancer to help them make informed decisions about prevention and early diagnosis.

To learn more about this issue, we conducted a study investigating the relationships between literacy, cancer fatalism, and active seeking of cancer information (4). Cancer fatalism can be described as deterministic thoughts about the external causes of the disease, the inability to prevent it, and the inevitability of death at diagnosis (5). We wondered whether low literacy and cancer fatalism pose barriers to seeking cancer information, and in particular whether low literacy might lead to fatalistic beliefs about cancer, which might then in turn stop people from seeking out cancer information.

Our logic model of the relationships between low health literacy, cancer fatalism, and cancer information seeking

We used data from the publicly available U.S. Health Information National Trends Survey (HINTS). The HINTS is a great resource for anyone who interested in trends in the use of cancer-related information among the general American public. The survey is nationally representative of American adults aged 18 years and over. We used data from the third cycle of the fourth round of HINTS, which was conducted in 2013. We used data from 2,657 American adults who had no cancer history. The measures of interest were:

Health literacy

• Reading comprehension of a nutrition label, scored out of 4 points

Cancer fatalism

• Agreement/disagreement with each of three statements:
• “It seems like everything causes cancer”
• “There’s not much you can do to lower your chances of getting cancer”
• “When I think about cancer, I automatically think about death”

Cancer information seeking

• Asked respondents whether they had ever searched for cancer information

The results shown below are representative of the American public aged 18 years and over.

What did we find?

One-third (34%) of American adults had low literacy, according to our measure. This is a substantial proportion of the population, given that the measure assessed basic reading comprehension of a nutrition label, which is important for health.

Most American adults (66%) agreed that, “it seems like everything causes cancer”. However, most disagreed (71%) with “there’s not much you can do to lower your chances of getting cancer”. Responses were more evenly balanced to, “when I think about cancer, I automatically think of death”, with 58% agreeing.

Just over half (53%) of the American public had ever searched for information about cancer. Independently of sociodemographic factors, adults with low literacy were less likely to search for information than those with high literacy. People who agreed that, “there’s not much you can do to lower your chances of getting cancer” were also less likely to search for cancer information. The other two fatalistic beliefs were not associated with cancer information seeking, but people with low income and low education were less likely to actively seek out cancer information.

Finally, we found that while literacy had a strong direct effect on cancer information seeking, the fatalistic belief, “there’s not much you can do to lower your chances of getting cancer” explained about 14% of the effect of literacy on cancer information seeking. This means that people with low literacy are slightly more likely to hold this fatalistic belief, which in turns acts as a barrier to seeking out information.

What does it mean?

This study indicates that addressing health literacy and fatalism about cancer prevention should be a priority for future cancer communication strategies. Population groups with less access to health care, who are the most vulnerable to low literacy and fatalistic beliefs about cancer, are also the least likely to benefit from cancer information. We feel that strategies to improve public beliefs and knowledge about cancer might be best placed outside of the clinical environment. For example, advertising strategies and public events in opportunistic settings such as road shows might help to increase incidental exposure to cancer information among those people who are least likely to actively seek it (6-8). Communication strategies such as patient narratives, such as those found on the Prevent Cancer Foundation website, also show promise. Overall, fatalism and health literacy may represent useful targets for cancer control strategies aiming to increase all people’s abilities to manage their risk of cancer, and to reduce social inequalities across the continuum of cancer control.

The full paper is available at Health Education and Behavior.

References

1. Finney Rutten LJ, Squiers L, Hesse B. Cancer-Related Information Seeking: Hints from the 2003 Health Information National Trends Survey (HINTS). J Health Commun 2006;11:147-156. doi: 10.1080/10810730600637574
2. Viswanath K. The communications revolution and cancer control. Nat Rev Cancer 2015;5:828-835. doi:10.1038/nrc1718
3. Finney Rutten LJ, Agunwamba AA, Wilson P, Chawla N, Vieux S, Blanch-Hartigan D, et al. Cancer-related information seeking among cancer survivors: Trends over a decade (2003-2013). J Cancer Educ 2015 [Epub ahead of print]. doi:10.1007/s13187-015-0802-7
4. Kobayashi LC, Smith SG. Cancer fatalism, literacy, and cancer information seeking in the American public. Health Educ Behav 2015 [Epub ahead of print]. doi: 10.1177/1090198115604616
5. Niederdeppe J, Levy AG. Fatalistic beliefs about cancer prevention and three prevention behaviors. Cancer Epidemiol Biomarkers Prev 2007;16:998-1003.
6. Ironmonger L, Ohuma E, Ormiston-Smith N, Gildea C, Thomson CS, Peake MD. An evaluation of the impact of large-scale interventions to raise public awareness of a lung cancer symptom. Br J Cancer 2015;112:207- 216. doi:10.1038/bjc.2014.596
7. Power E, Wardle J. Change in public awareness of symptoms and perceived barriers to seeing a doctor following Be Clear on Cancer campaigns in England. Br J Cancer 2015;112:S22-S26. doi:10.1038/bjc.2015.32
8. Smith SG, Rendell H, George H, Power E. Improving cancer control through a community-based cancer awareness initiative. Prev Med 2014;60:121-123. doi:10.1016/j.ypmed.2013.11.002

By Claire Friedemann Smith, Charlotte Vrinten, and Monica Koo

Words are powerful. One area where this is undeniably true is in our communication around health and illness: the words we use have the power to comfort and support, or isolate and dishearten. The tricky thing is, one person’s call to arms could be another’s final straw. This makes it very important to think about how we as researchers, and the wider medical community, talk about illness, particularly illnesses that are very emotionally charged such as cancer. Last week, the cancer screening and early diagnosis group at the HBRC discussed a presentation on this subject given by Professor Elena Semino about the use of metaphors in communication around cancer, recorded at Cancer Research UK earlier this year.

Professor Semino presented the results of a large mixed methods study she had led into the use of metaphors by patients and healthcare professionals when talking about cancer. The team used both qualitative and quantitative methods to analyse two datasets based on online material by patients and healthcare professionals. The researchers found that the metaphors used by patients and healthcare professionals broadly fell into two categories: ‘violence’ and ‘journey’ metaphors. Violence metaphors were used to describe cancer as an enemy to be fought, using drugs and medical research as weapons, with the aim of conquering the disease and winning the battle by surviving the cancer. Journey metaphors, on the other hand, describe cancer as a road to travel, with an uncertain destination.

The use of metaphors is probably familiar to any of us who have seen adverts raising money for cancer research or have had personal experience of talking about cancer. This study found that using these metaphors could have both positive and negative consequences for patients. For some patients, the thought of fighting a battle to defeat cancer galvanised and motivated them in their attitude towards cancer treatment, and patients often encouraged each other and described success in treatment using violence metaphors. But others felt disempowered by this metaphor: they felt that it was the disease conquering them rather than the other way around. Professor Semino highlighted how violence metaphors may be particularly inappropriate for terminal cancer patients for whom thinking of cancer as a “losing battle” could be demoralising and could lead to feelings of being blamed and stigmatised by others for “not fighting hard enough”.

So were journey metaphors the better option? The researchers found that journey metaphors were similarly used in both positive and negative ways. Some patients used journey metaphors to express a sense of purpose and companionship: those with new diagnoses were being led by others who had started their journey before them and understood what they were going through because they had travelled the same road. Other patients used the journey metaphor to express their disempowerment and lack of control as they were travelling against their will, on a journey they could not control, and along a road they did ‘not even wish to be on’.

There are many other metaphors that may be used to describe cancer: for example, BBC producer Andrew Graystone described his cancer as “an unwelcome lodger”. Others have described cancer as a “scary fairground ride” where you just have to hang on until you can get off. Professor Semino concluded that when discussing cancer with patients, we should adopt a particular metaphor depending on the individual patients’ preferences, and in mass communications we should use metaphors that work positively for most people and do not harm others.

With this in mind, Professor Semino and her colleagues are developing a “metaphor menu” for cancer patients to provide alternatives to the common battle and journey metaphors. This led to a lot of interesting discussion here at the HBRC around how this would be presented to patients. When would it be appropriate to offer it? How effective would it be when violence and journey metaphors continue to dominate cancer discussions in the mass media? Although we did not come up with any definite answers to these questions, we are very much looking forward to seeing how the metaphor menu will be taken forward.

It is also interesting to consider the implications of violence metaphors for public health. Recent work by Hauser and Schwarz suggests that violence metaphors may make people less likely to engage in some cancer prevention behaviours, such as stopping smoking or limiting alcohol intake. But just like Professor Semino’s research showed, not all violence metaphors are bad. A study on flu vaccinations found that violence metaphors actually increased people’s willingness to get a flu jab. The question then becomes: when is it appropriate to use violence metaphors in public health communications?

Although more research on the topic is needed, Hauser and Schwarz suggest that violence metaphors encourage an aggressive attitude towards an enemy and promote an active attack on this enemy. So violence metaphors may be helpful when we need to actively do something to protect against cancer (for example, exercising or eating more fruit and veg), but may not be so helpful when we need to limit ourselves to reduce the risk of cancer, as with stopping smoking, reducing alcohol intake, or losing weight. Violence metaphors may be inappropriate in these circumstances, and may even be harmful for public health.

Professor Elena Semino’s presentation and the discussion that followed shed light on an issue that is rarely at the forefront of our minds as cancer researchers. It emphasised the importance of language in how we understand and process our experiences, and how we express our emotions and feelings. Importantly, it also highlighted that the ways we choose to talk about cancer may positively or negatively influence patient experiences and public health. As we get better at preventing, detecting, diagnosing, and treating cancer, it will be interesting to see how the language we use to talk about cancer evolves in the future.

References
Graystone A. (2013) Viewpoint: Did Richard Nixon change the way people describe cancer? BBC News Magazine.

Hauser DJ, Schwarz N. (2014) The War on Prevention: Bellicose Cancer Metaphors Hurt (Some) Prevention Intentions. Personal Soc Psychol Bull 41:66–77.

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We are delighted to host a blog on a recent collaborative paper, written by guest blogger Silvia Mendonca, Statistician, Cambridge Centre for Health Services Reserach, University of Cambridge.

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By Silvia Mendonca

In our recent paper we studied how pre-diagnosis experience affects subsequent care experience in cancer patients (1). Our findings suggest that patients who experienced more pre-referral consultations in primary care are more likely to be less satisfied with their care. As perhaps could have been expected, the associations found were stronger for questions involving primary care compared to hospital care.

We used data from over 70,000 patients who responded to the English Cancer Patient Experience Survey. In this survey patients report the number of pre-referral consultations with a GP, which was used as a marker of diagnostic delay. As different patients may vary in their tendency to give critical responses in general, we adjusted our analysis using a response tendency item. This item was calculated using mixed effects models and included responses to several questions from the survey.

This work further supports efforts aimed at reducing time to diagnosis and amplifies previous evidence where patients expressed preference for having cancer investigations at low risk levels (2).

The fact that associations found were stronger for aspects involving primary care has implications for follow up involving general practice.

The research was covered by BMJ News and general media.

1. Mendonca S.C. et al. Pre-referral general practitioner consultations and subsequent experience of cancer care: evidence from the English Cancer Patient Experience Survey. Eur J Cancer Care (Engl). 2015 Jul 30. doi: 10.1111/ecc.12353. [Epub ahead of print]

2. Banks, J., Hollinghurst, S., Bigwood, L., Peters, T.J., Walter, F.M., Hamilton, W. Preferences for cancer investigation: A vignette-based study of primary-care attendees (2014) The Lancet Oncology, 15 (2), pp. 232-240.