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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.

    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.

    Are self-reports of cancer screening participation accurate?

    By Jo Waller, on 26 September 2015

    By Siu Hing Lo

    Health behaviour research often relies on surveys to collect data of people’s lifestyle and views about health. However, there is concern about the reliability of self-report measures. Common reasons for inaccurate self-report include the desire to give socially desirable answers and issues with recall. When people report their participation in cancer screening their answers are likely to be affected by both. Surveys consistently show that most people agree that screening is a good idea, so it is reasonable to assume they might be tempted to give a socially desirable answer when asked about their own behaviour.

    Previous evidence from the United States suggests that social desirability is not the (main) explanation (Vernon et al., 2012). Nevertheless, recall could still be a significant issue. The most common screening tests used in the UK require participation at two- to five-yearly intervals. This means that accurate self-report requires people to recall what they have done over a long period of time. In our latest survey study, we asked respondents permission to check their NHS screening records, so we could compare their self-reported participation in bowel cancer screening with their NHS records.

    Unfortunately only around 40% of the total survey sample agreed to this ‘record check’. People who agreed were also more likely to be more affluent and have participated in bowel cancer screening.
    On the positive side, we showed that those who consented to the record check could accurately report whether they have ever take part in bowel cancer screening. A large majority also accurately reported whether they had taken part at least twice (81%) and whether they had taken part every time they had been invited (77%).

    Interestingly, mismatches between self-report and records were due to both ‘over-reporting’ and ‘under-reporting’ of screening participation. On the one hand, one-fifth of respondents who said they had taken part every time, had in fact failed to respond to at least one invitation. On the other hand, roughly one-sixth reported having taken part once, even though – in reality – they had taken part at least twice.
    Although we could only examine the accuracy of self-reported bowel cancer screening among survey respondents who gave permission for the record check, it allowed us to explore what type of biases are likely to result from different survey questions. The biggest obstacle to accurate self-report of bowel cancer screening seemed to be recall of the number of screening tests received and completed. Survey measures which rely less on recall of each screening episode are therefore more likely to yield reliable data.

    References

    Lo, S.H., Waller, J., Vrinten, C., Wardle, J. & C. von Wagner (2015), ‘Self-reported and objectively recorded colorectal cancer screening participation’, Journal of Medical Screening, in press.

    Vernon S.W., Abotchie P.N., McQueen A., et al. (2012), ‘Is the Accuracy of Self-Reported Colorectal Cancer Screening Associated with Social Desirability?’, Cancer Epidemiology Biomarkers and Prevention, 21, 61-5.

    Getting a ‘hint’ about social inequalities in cancer information seeking

    By Lindsay C Kobayashi, on 22 September 2015

    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.

     

    Figure 1

    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

    How should we talk about cancer?

    By Minjoung M Koo, on 2 September 2015

    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.

    Scherer AM, Scherer LD, Fagerlin A. (2015) Getting ahead of illness: using metaphors to influence medical decision making. Med Decis Mak 35:37–45.

    Semino E, Demjen Z, Demmen J, Koller V, Payne S, Hardie A., et al. (2015) The online use of Violence and Journey metaphors by patients with cancer, as compared with health professionals: a mixed methods study. BMJ Support Palliat Care 1–7.

    Semino E. (2014) A ‘metaphor menu’ for cancer patients. Ehospice UK.

    ‘One size fits all’ or ‘made to order’? – How beliefs might explain the sociodemographic profile of people who take part in cancer screening

    By Siu Hing Lo, on 21 August 2015

    Many studies have looked at the sociodemographic profile of people who take part in cancer screening. For example, one study from our research group showed that people living in the most affluent areas in England were almost twice as likely to participate in bowel cancer screening as those in the most deprived areas (von Wagner et al. 2011 ). Other studies have, among others, shown differences in participation rates between married and unmarried people (Lo et al. 2013 ) and white and non-white groups (Szczepura et al. 2008 ). In our latest study , we examined why there are sociodemographic differences in bowel cancer screening participation.

    To do this, we related the sociodemographic differences in participation to key beliefs about bowel cancer screening. These included beliefs about the usefulness of screening even if you do not have symptoms, whether people who are important to you (e.g. family and friends) take part or think you should take part in screening, and how disgusting or embarrassing the screening test is.

    Sociodemographic differences in screening participation appeared to be largely explained by beliefs about screening.   However, not all beliefs were related to sociodemographic differences in the same way. Socioeconomic differences in participation were related to all key beliefs. In contrast, differences by marital status were mainly related to beliefs about other people, and ethnic differences were only related to the misconception that screening is only for people with bowel-related symptoms.

    When interpreting these results, a few strengths and limitations of this study should be noted. The data were collected through a nationwide population-based omnibus survey on a variety of topics, mostly unrelated to health. The main advantage of this method is that the survey sample was broadly representative of the general population. Nevertheless, our results need to be interpreted with caution due to the cross-sectional nature of the survey. We could not examine causality, and the relationships between sociodemographics, beliefs and screening participation might have been over-estimated.

    Notwithstanding, our findings suggest that distinct cognitive patterns may underlie sociodemographic differences in screening participation rates. These need to be well-understood before we can reduce any inequalities in these important health behaviours. Although some beliefs seem to be common to different types of sociodemographic inequalities, others are not. Future research should examine whether ‘tailored’ (made to order) invitation materials are more effective at engaging different demographic groups than the current ‘one size fits all’ approach.

    References

    Lo, S.H., Waller, J., Vrinten, C., Kobayashi, L. & C. von Wagner (2015), ‘Social cognitive mediators of sociodemographic differences in colorectal cancer screening uptake’ BioMed Research International, in press.

    Lo, S. H., Waller, J. Wardle, J. & C. von Wagner (2013), “Comparing barriers to colorectal cancer screening with barriers to breast and cervical screening: a population-based survey of screening-age women in Great Britain,” Journal of Medical Screening, 20:2, 73–79.

    Szczepura, A. Price, C. & A. Gumber (2008), “Breast and bowel cancer screening uptake patterns over 15 years for UK South Asian ethnic minority populations, corrected for differences in socio-demographic characteristics,” BMC Public Health, 8, article 346.

    von Wagner, C. Baio, G., Raine, R. et al. (2011), “Inequalities in participation in an organized national colorectal cancer screening programme: results from the first 2.6 million invitations in England,” International Journal of Epidemiology, 40: 3, 712–718.

    Public enthusiasm for cancer screening

    By Jo Waller, on 10 February 2015

    We’ve talked in this blog before about how cancer screening has harms as well as benefits; the most serious of which is the potential for overdiagnosis or over-detection – that is, picking up cancers that never would have done any harm, and that would never have come to light if we hadn’t looked for them.  This is something that is far from intuitive for many people and that runs counter to long-standing messages about the importance of ‘catching cancer early’.  This BMJ blog explains some of the issues really well.

    In a new study just published by our group, we found that public enthusiasm for cancer screening was very high indeed.  We carried out a survey of nearly 2,000 men and women aged 50-80 years across the UK and found that 89% of them thought that cancer screening for healthy people is ‘almost always a good idea’.  Most people believed that finding cancer early means that less treatment will be needed, and that treatment is more likely to be life-saving.  This is generally true, so it’s great to see that message has really entered the public consciousness.

    More surprising was the finding that nearly half of the respondents said that they would want to be tested to see if they had the kind of slow-growing cancer that would be unlikely to cause harm in their lifetime.  Most experts in the field assume that if people understood about the risk of overdiagnosis, they would make different decisions about screening participation.  Our findings suggest that this might not be the case.

    One possibility is that people don’t understand that this kind of diagnosis might lead to unnecessary surgery, chemotherapy or radiotherapy, with all the side-effects that those treatments involve.  Another possibility is that people have such an entrenched view of cancer as a killer that they find it difficult to conceive of having a tumour that might not need treatment – and would rather have it removed, even if there’s no clear health benefit to doing so (in fact, it may even harm their health).

    Opinion was spilt about the value of knowing about an incurable cancer – 49% of the sample would still want to know, even if nothing could be done, but 46% would rather not know.  Perhaps people vary in how important it is for them to have time to plan for their death, and how this weighs against the benefits of enjoying life without a cancer diagnosis.

    The NHS offers screening for breast, cervical and bowel cancers, but encourages people to make an informed choice about whether to take part or not.  In our sample, two thirds of women, and almost as many men judged a person who doesn’t go for screening to be ‘irresponsible’, suggesting that not everyone sees non-attendance for cancer screening as a legitimate, personal choice.

    We continue to work on finding the best ways to communicate with the public about cancer screening so that everyone can understand the harms and benefits and make a choice about whether to take part.  This study has made us realise that it could be difficult to persuade people that screening is only worthwhile for certain cancers and in certain groups.

    It’s great that the message about the potential benefits of early diagnosis are getting through, but now we may need more nuanced messages to help people understand the exceptions to this rule, and to acknowledge that in some cases, not being screened is a sensible decision.

    Can catching cancer early ever be a bad thing?

    By Susanne Meisel, on 31 August 2014

    The chance of surviving cancer is usually much better if it is found early; ideally before a person has any symptoms. One way to achieve earlier detection of cancer is by screening.

    Breast cancer screening is one of the three NHS cancer screening programmes and is currently offered to all women aged 50 to 70 in the UK. This is done using mammography, which can detect cancers that are too small to see or feel.

    Breast cancer screening is a form of secondary cancer prevention because it does not prevent breast cancer from happening in the first place; it only helps to find it earlier. Primary breast cancer prevention, on the other hand, is everything a person does to try and prevent breast cancer from ever developing; for example by not smoking, keeping alcohol within sensible limits and keeping a healthy weight. Although doing those things does not guarantee that a person will never get breast cancer, there is good evidence that it will reduce the chance.

    However, any type of cancer screening not only has benefits, but also the potential to cause harm. An independent expert panel was asked not long ago to weigh up the benefits and harms of breast screening. They concluded that on balance, breast screening has more benefits than harms. Therefore, it is still recommended.

    One particular risk of harm that the breast screening panel identified was overdetection (sometimes known as overdiagnosis). Overdetection happens when a cancer is picked up by a mammogram which would have never caused a problem during a woman’s lifetime – either because it was slow-growing, or because she would have died of something else before the cancer became a problem. However, because it is currently impossible to tell whether a cancer is ‘dangerous’ and fast-growing, or won’t cause further problems because it’s growing only very slowly, all cancers are treated as ‘dangerous’. This means that some women will have treatment that is very invasive and distressing (for example breast surgery or chemotherapy) when actually the cancer would not have caused them any harm. Currently, it is estimated that for every life saved by screening, three cancers are detected that would have not caused any problems.

    Whether or not to attend breast cancer screening is a personal choice .
    However, for women to make an informed choice about breast screening, they need to know about all the benefits and harms, including the risk of overdetection.

    Our researchers carried out a survey with 2,272 women from the general population to find out whether women knew about overdetection, and whether getting some information on it would influence their decision to go for breast screening. Therefore, they asked women about screening intentions, before and after giving them information on overdetection. Women were told about the problem of treating cancers that never would have caused harm, and that for every woman who has her life saved by breast screening, three will have treatment for a cancer that would never have become life-threatening. The researchers thought that younger women (<47) who were not yet eligible for screening would have lower intentions to go for screening after hearing some information about overdetection than women who were already eligible for breast screening, because the latter may already have made up their minds.

    The results showed that about half of the women (53%) were already aware of overdetection, with greater awareness among women who were already eligible for screening. However, even after getting some information on overdetection, only about two thirds of the sample (64%) felt that they understood what the concept meant, and a similar number (57%) understood that women who go for breast screening are more likely to be diagnosed with breast cancer than women who don’t. Interestingly, only a small number of women (7%) showed a decrease in screening intentions after receiving information on overdetection. As predicted by the researchers, a greater number of these women were not yet eligible for breast screening.

    These findings suggest that the concept of overdetection may be difficult to understand for some women, and that brief information may not be enough to help them make an informed choice. However, one limitation of this study was that women had very little time to take in the information that was given to them. Perhaps understanding would have improved if women had had more time to process what it meant. Alternatively, it is possible that women took a ‘better safe than sorry’ approach to overdetection, which has been suggested by findings from some focus groups that our researchers did with 40 women.

    Future work will help to understand how best to communicate the benefits and harms about cancer screening to different groups of people, so that they can make a truly informed choice about whether or not to participate.

     

    References:

    Waller, J et al. A survey study of women’s responses to information about overdiagnosis in breast cancer screening in Britain (2014) British Journal of Cancer. doi: 10.1038/bjc.2014.482

    Waller J, Douglas E,Whitaker KL, et al Women’s responses to information about overdiagnosis in the UK breast cancer screening programme:a qualitative study. BMJOpen 2013;3
    http://bmjopen.bmj.com/content/3/4/e002703.full.pdf+html

     

    Internet use promotes cancer preventive behaviours, but mind the ‘digital divide’

    By Lindsay C Kobayashi, on 4 November 2013

    The saturation of the Internet into daily life in many parts of the world has characterised the early part of the 21st century.  As a communication medium, the Internet has huge potential to increase health-related knowledge and behaviours among the general population to ultimately help prevent chronic diseases such as cancer.  However, the actual effectiveness of the Internet in improving cancer-preventive behaviours among older adults, who are among the most at risk for cancer, is unclear.  Importantly, there is unequal access to and use of the Internet in the population.  In the United Kingdom, women, older adults, and those with low income are less likely to use the Internet; this phenomenon is called the ‘digital divide’.  If using the Internet leads to participation in healthy behaviours and ultimately lower chances of cancer, then inequalities in access to online health information may increase inequalities in cancer outcomes.

    Our study examined whether Internet use is associated with cancer-preventive behaviours and whether a ‘digital divide’ exists. To do this we used data from 5,943 participants in the English Longitudinal Study of Ageing: a nationally-representative study of English adults aged 50 years and older.  The study participants responded to questions about Internet and email use, self-reported colorectal and breast cancer screening, physical activity, eating habits, physical and cognitive abilities, and demographics every two years from 2002 to 2011.

    We found that 41.4% of older English adults reported not using the Internet at all between 2002 and 2011, while 38.3% used the Internet intermittently and 20.3% used the Internet continuously during this time period.  Men and women who consistently used the Internet were two times more likely to participate in colorectal cancer screening than those who never used the Internet. They were also 50% more likely to take part in regular physical activity, 24% more likely to eat at least five daily servings of fruit and vegetables, and 44% less likely to be current smokers.

    In short, we found that Internet plays a positive role in promoting healthy cancer-preventive behaviours.  Our research also confirmed that a ‘digital divide’ exists: Internet use in this study was higher in younger, male, white, wealthier, and more educated adults and lower in older, female, non-white, poorer, and less well-educated adults.  Age is a particularly important factor in the ‘digital divide’, as over 40% of all adults aged 50 and up reported never using the Internet.  Providing appropriate support and opportunities for Internet access among older adults may be a key first step to improving health among the ageing population. More generally, increasing Internet access among groups with low rates of Internet usage may have substantial public health benefits.  Policymakers must understand this potential for ‘digital divides’ to influence inequalities in cancer outcomes – whether for worse, or, for better if targeted efforts are made to increase Internet access and literacy among vulnerable groups.

    References

    Office for National Statistics. Internet access quarterly update, 2013 Q1. 2013 [cited 25 October 2013]. Available from: http://www.ons.gov.uk/ons/rel/rdit2/internet-access-quarterly-update/2013-q1/stb-ia-q1-2013.html

    Viswanath K, Nagler R, Bigman-Galimore C, McCauley MP, Jung M, Ramanadhan S. The communications revolution and health inequities in the 21st century: implications for cancer control. Cancer Epidemiol Biomarkers Prev 2012;21:1701-8.

    Xavier AJ, d’Orsi E, Wardle J, Demakakos P, Smith SG, von Wagner C. Internet use and cancer-preventive behaviours in older adults: findings from a longitudinal cohort study. Cancer Epidemiol Biomarkers Prev 2013 (in press).

     

    Jade Goody: Her role in women’s cervical screening decisions

    By Jo Waller, on 23 January 2013

    Type Jade Goody’s name into Google Images and you find an array of pictures from bouncy Big Brother star, through smiling but bald cancer patient, to pain-wracked dying woman.  Jade was diagnosed with cervical cancer in 2008 and died at the age of 27 just a few months later.  Her tragic story received unprecedented media attention and the general public were privy to the intimate details of the last months of her life.  In what has become known as the ‘Jade Effect’, her story had an extraordinary impact on women’s participation in cervical screening – we think about half a million extra women went for screening during the time of her illness.

    As psychologists, we were interested in which women were influenced by Jade’s story and why.  To try to understand more about the Jade Effect, we did a survey of 890 women in England – all of them within the age range that are offered screening..  We collected information about women’s age and their social background and we asked them if they’d been affected by Jade’s story in their decisions about cervical screening.  The survey was done about 18 months after Jade’s death, so we asked women to think back over that time period.

    The most interesting finding was that younger women were more influenced by Jade, and so were women who had children at a younger age, and who came from more deprived backgrounds.  So why do we think this is?  Well, Jade was 27 when she died, and it’s no secret that she had a hard childhood in Bermondsey – hers was a ‘rags to riches’ story.  She also had children young – in her early 20s.  So it seems possible that the women who were most influenced by her were those who could identify with her.  Perhaps there was a sense of ‘it could have been me’ – and this was the prompt they needed to go for screening.  Suddenly the stakes were raised and the barriers to having a smear test didn’t seem so important.  It’s also possible that some people are more affected by stories than facts.  The blanket media coverage and the emotional story of Jade’s illness probably affected people very differently compared with the kind of factual leaflets that are usually used in screening programmes.  It could be a case of heart vs. head, and perhaps as psychologists and health educators, we need to realise that stories, or ‘narratives’ as they’re sometimes known, can be a good way to get our message across.

     

    Jo Waller (j.waller@ucl.ac.uk)

     

    References

    Lancucki L, Sasieni P, Patnick J, Day TJ, Vessey MP.  The impact of Jade Goody’s diagnosis and death on the NHS Cervical Screening Programme.   J Med Screen. 2012 Jun;19(2):89-93. doi: 10.1258/jms.2012.012028. Epub 2012 May 31.

    Marlow LA, Sangha A, Patnick J, Waller J.  The Jade Goody Effect: whose cervical screening decisions were influenced by her story?   J Med Screen. 2012 Dec 27. [Epub ahead of print]