‘Health Chatter’: The Health Behaviour Research Centre Blog
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    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.


    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.


    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

    The new Bowel Scope Screening programme: Who is taking part?

    By Bernardette Bonello, on 21 September 2015

    In March 2013, the NHS in England introduced the Bowel Scope Screening programme. This is a one-time only screening offered to people at age 55.

    Bowel scope screening is a test (also known as flexible sigmoidoscopy or flexi-sig) done by a specially trained nurse or doctor. They use a thin flexible tube with a tiny camera on the end to look inside the large bowel. The screening looks for growths or polyps in the bowel and, if they find any, can be removed straightaway. Bowel polyps are harmless but if they are not removed, these polyps could turn into cancer. Therefore, by removing pre-cancerous polyps, the screening test helps to prevent bowel cancer. The test can also find cancer that is already developing and detecting cancer early increases the chances of successful treatment.

    A previous large study showed that screening using flexible sigmoidoscopy can prevent bowel cancer by removal of pre-cancerous polyps and significantly reduces bowel cancer deaths. This evidence led to the introduction of bowel scope screening within the NHS Bowel Cancer Screening Programme.

    The bowel scope screening programme is being rolled out in stages. Our latest study is the first to look at the participation rates within the new bowel scope screening programme for the first six screening centres.

    Getting the full public health benefits of screening depends largely on how many people take part and go to their screening appointment. In the first 14 months, these six centres invited 21,187 individuals to have bowel scope screening: 43% of those invited had the screening test. This is encouraging for a fairly new and invasive test, especially as there are currently no publicity campaigns for bowel scope screening.

    What is most worrying in our findings is that people living in poorer areas were less likely to take up the screening test (33%) than people living in more affluent areas (53%). Differences in uptake could mean that people from more deprived areas will be much less likely to benefit from this test. This might create inequalities in the number of people diagnosed with late stage bowel cancer when treatment is often more invasive and outcomes less favourable.

    Interestingly, men were more likely to go for bowel scope screening when invited than women (45% vs 42%). This is surprising as women are more likely to participate in the existing bowel cancer screening programme which uses a test done at home, called faecal occult blood test (FOBt). Women also have high rates of uptake for breast and cervical cancer screening. The uptake rate also varied between the six centres, partly because of differences in deprivation but mostly because of other service-related differences which are yet to be explored.

    Bowel cancer is common but bowel scope screening helps prevent it. Although the initial participation rate is encouraging, the differences in uptake between more deprived and more affluent areas are a concern. Bowel scope screening will be fully rolled out in England by 2018 and in light of its huge health benefits, we need to invest in strategies to increase public participation and to narrow inequalities in uptake so that everyone has the chance to benefit from this screening.

    This analysis is part of an ongoing larger study (Flexi-Quest) funded by Cancer Research UK which wants to find out what people think about bowel scope screening, and why some people may be less likely to go for screening. This first look at the data gave an indication about differences in participation rate; however, the findings show that there could be other factors important for participation. As part of Flexi-Quest, we will be conducting surveys and interviews that aim to identify ways in which we can remove barriers and reduce inequalities in bowel scope screening.


    Atkin W, Edwards R, Kralj-Hans I, et al. Once-only flexible sigmoidoscopy in prevention of colorectal cancer: a multicentre randomised controlled trial. Lancet 2010;375:1625–33.

    McGregor, L.M., Bonello, B., Kerrison, R.S., Nickerson, C., Baio, G., Berkman, L., Rees, C.J., Atkin, W., Wardle, J., & von Wagner, C. Uptake of Bowel Scope (Flexible Sigmoidoscopy) Screening in the English National Programme: the first 14 months. Journal of Medical Screening 2015. DOI  10.1177/0969141315604659

    Public Health England. NHS Bowel Cancer Screening Programme: NHS bowel scope screening, http://www.cancerscreening.nhs.uk/bowel/bowel-scope-screening.html (2015, accessed 26 August 2015).

    Delays in the diagnosis of cancer: an issue on both sides of the Atlantic

    By Minjoung M Koo, on 18 September 2015

    By Monica Koo and Yoryos Lyratzopoulos

    In recent years, there has been a lot of attention on the delays in the diagnosis of cancer in England. Evidence from the International Cancer Benchmarking Partnership (ICBP) has indicated that delays in diagnosis were contributing to poorer cancer survival in England compared to other countries. However, it would be wrong to assume that delays in diagnosis of cancer were unique to countries with a strong primary care system such as England.

    We recently wrote an editorial in Cancer Epidemiology on this very topic, commenting on a new population-based study looking at delays in the diagnosis (and treatment) of lung cancer in elderly patients in the US. The study was based on linked routine healthcare data (SEER-Medicare to be specific) collected on nearly 50,000 US patients. There are a few key findings that we highlight in the editorial:

    • The median diagnostic interval (the time between when a patient first presents with symptoms and diagnosis) was around 180 days (almost 6 months). This means that more than half of the patients in this study had a diagnostic interval of longer than 6 months, which is a pretty alarming finding. Similar findings have been published in England recently, showing how difficult it can be to detect and diagnose lung cancer.
    • Older patients had longer median diagnostic intervals than younger patients, and women had longer diagnostic intervals than men. Again, similar patterns have been described before in the UK, but the inequalities found by this study were particularly large and clearly further research is needed in this area.
    • There were also delays from diagnosis to treatment, which were much shorter than the diagnostic interval (27 and 18 days for patients with non-small cell and small cell lung cancer respectively). Patient characteristics didn’t have much effect on the length of the treatment interval, compared to the diagnostic interval. In other words, once a diagnosis of lung cancer was made, the patient’s age, sex, race, and comorbidity status (whether they had other health conditions) didn’t influence their time to treatment much.

    Relatedly, specialist investigations are increasingly being used to inform treatment options, including PET-CT imaging and biomarker profiling. Unfortunately such advances in personalising cancer care also have the potential to delay the start of treatment. Although challenging, this may be seen as an opportunity to streamline and integrate cancer care pathways and services.

    Overall, the findings of the US study add to the growing body of evidence on diagnostic delays in cancer from the UK and other countries, clearly indicating that this is a global problem that transcends countries and healthcare systems. Building on the shared learning generated by the ICBP, future international efforts in cancer outcomes research should aim to include US patients in order to bring further insights into the cause of such delays. By first asking “why” the delays occur, we can then turn to the “how” and “what” we can do about these universal problems.

    Our editorial is open access (freely available online) and is available at: http://dx.doi.org/10.1016/j.canep.2015.08.008

    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.

    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.


    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.

    Timely diagnosis of cancer matters for patient experience

    By Georgios Lyratzopoulos, on 2 August 2015


    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.


    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.

    “I’ve never heard of it”; “It doesn’t apply to me”- Two very different reasons why ethnic minority women are not getting screened for cervical cancer

    By Laura Marlow, on 22 July 2015

    Over the last 10 years several studies in the UK have suggested that women from ethnic minority backgrounds are less likely to attend for cervical screening, the question of why this might be remains. Our recent work published last week in the British Journal of Cancer attempts to shed some light on this.  We surveyed 720 women aged 30-60 years old from Indian, Pakistani, Bangladeshi, African, Caribbean and white British backgrounds, using quota sampling to ensure a large enough sample of women from each ethnic group were included. Compared to the white British women, women in each of the ethnic minority groups were between 5 and 13 times more likely to be a non-attender at screening, i.e. they had not been screened in the last 5 years. This is after adjusting for age, marital status and education level.

    Never heard of screening:
    Among the ethnic minority women 24% said they had never heard of cervical screening or they had never received an invitation. These women were more likely to have migrated to the UK as adults, not speak English well and have no formal qualifications. This finding is in line with our previous qualitative work which suggests a general lack of awareness about the cervical screening programme. It therefore seems important that we find ways to engage these women with the issue of cancer screening, and raise their awareness of the programme and their eligibility to take part. In England, all women aged 25-64 who are registered with a GP receive regular screening invitations, but our findings suggest that this information isn’t getting through to some groups.

    Been screened before, but not recently:
    We also identified a different group of non-attenders who had been screened in the past (more than 5 years ago), but had not been screened as recommended, despite receiving a letter reminding them to go. Overall 37% of ethnic minority women fell into this group. These women were more likely to be in the older age group (50-60 years) but other socio-economic factors (such as education level, migration status and language) didn’t predict who fell into this group. Exploring the reasons for being overdue cervical screening in older women is important as recent work suggests that not being screened between the ages of 50 and 64 years is associated with a greater risk of cervical cancer when women are over 65 years. There is also evidence that women over 65 years from both Asian and Black backgrounds have higher rates of cervical cancer. We looked at a range of attitudes to screening and found that women who had not attended as recommended were more likely to think that screening didn’t apply to them, either because they did not have any symptoms or because they were not sexually active. Some considered screening to be important, but had difficulty fitting it in around other commitments. This finding is consistent with our qualitative work where one Bangladeshi woman said; “It wasn’t that I didn’t want to do it, I felt that it wasn’t a great priority for me at that time, everything else was more important”. For these women interventions should be designed to ensure an understanding of the purpose of screening and the potential benefits for asymptomatic women and those who are not currently sexual activity.

    In this study and others, we are trying to gain a better understanding of why some people don’t take part in cancer screening. As this paper shows, people’s reasons can be very different, from not knowing anything about screening, to thinking it’s important but being too busy to go. By understanding more about these different reasons, we can help to ensure that everyone makes an informed choice about screening, and is able to take part if they want to. We hope this work will help to reduce inequalities in screening participation and make sure that everyone is properly informed about the purpose of screening.

    ‘I’m either going through the menopause, or I’ve got cervical cancer’ – how do women make sense of bodily changes that could (but probably don’t) signal cancer?

    By Jo Waller, on 7 July 2015

    The recent cervical screening awareness week was a great opportunity to share information about cervical screening.  Screening (the ‘smear test’) aims to pick up and treat abnormal cells in the cervix before they become cancer.  But for most gynaecological cancers, there isn’t a screening programme, so noticing symptoms and getting them checked is the key to making sure cancer can be diagnosed at an early stage when treatment is most effective.

    Our newly published research paper tried to understand how women notice and make sense of symptoms that might indicate a gynae cancer.  There are five of these cancers, affecting the cervix, womb, ovary, vagina and vulva.  They have a range of symptoms, many of which are common and are caused by much less serious conditions – things like bloating, bleeding between periods or after sex, and changes in bowel habits.  We interviewed 26 women who’d had these kinds of symptoms to find out what they thought had caused them, and what they’d done about them.  Generally, and understandably, most women assumed that the symptoms were caused by everyday things like diet, the contraceptive pill, menopause or pre-existing conditions like fibroids.  We didn’t mention cancer in the interviews, and nor did most of the women taking part.  One participant whose periods had become longer than usual said: ‘I have a contraceptive implant which can cause irregular bleeding … It never caused me any trouble and suddenly all this. So that could be one of the reasons.

    Most women in our study tried to manage the symptoms themselves, or talked to friends or family about them, rather than going to the doctor.  They only tended to see their GP if the symptoms got worse or became persistent.

    Our study highlights the essential conundrum of cancer symptoms, which is that the symptoms that indicate cancer are often quite common, and in most cases will be have a much less serious explanation.  But if we ignore them completely, or until they become debilitating, we risk diagnosing cancer at a later stage when treatment might be more aggressive and less effective.  The difficult thing is finding the balance between rushing to the doctor for every twinge, and leaving it too late when something is really wrong.

    Cancer Research UK have developed guidelines to help people decide when it’s appropriate to go to the doctor and get a symptom checked out.  For example, with bloating, they suggest you make an appointment if you’ve been bloated on most days for at least 3 weeks.  This should be useful for people worrying about whether their symptom is serious enough to warrant ‘bothering’ their GP, which is sometimes a barrier to making an appointment.



    Our research group is continuing to do work to try to understand how people make sense of symptoms, and the processes through which they decide if and when to seek help.  If you do work in this area, you might be interested in this funding call for early diagnosis research.  And if you have comments on our study, we’d love to hear them.

    Learning to like vegetables: Starting early

    By Alison Fildes, on 10 June 2015

    Vegetables are commonly among children’s least liked foods, while sweet-tastes are preferred from the outset. These preferences are reflected in children’s diets with children in the UK and other European countries eating too few vegetables and too many sugary foods. Evidence suggests introducing vegetables early in life may have important implications for future health. It is possible to learn to like foods, such as vegetables, simply by trying them on multiple occasions. Older children (or adults) may need to try a food 14 times or more before they begin to like it but infants are particularly accepting of new tastes. This makes the weaning stage is a key period for learning to like a variety of different foods.

    As part of the European HabEat project we conducted an exploratory trial investigating the impact of advising parents to introduce of a variety of single vegetables at the very start of weaning. Pregnant women or mothers with infants less than 6 months old were recruited from healthcare settings in the UK, Greece and Portugal. Mothers and their infants were randomized (allocated by chance) to either an intervention group or a control group, ensuring there were equal numbers of breast-fed and formula-fed infants in each group. Intervention mothers were visited before they started weaning and were given advice on introducing five vegetables (one per day) as their baby’s first foods, repeated over 15 days. After the first 15 days, intervention mothers were told to continue to offer vegetables but also to start introducing other age-appropriate foods such as fruit. Mothers in the control group received standard care, which varied from country to country. For example, UK recommendations are to introduce fruits, vegetables and baby rice or cereal as first foods, but the information provided to mothers is inconsistent and access to advice may vary by region.

    Taste tests were conducted one month after the start of weaning. Intervention and control infants were fed unfamiliar vegetable (artichoke) and fruit (peach) purées and a researcher recorded how much of it they ate (g) and how much they appeared to enjoy these foods. When the results for the UK, Greece and Portugal were combined (n=139) the children who took part in the intervention, and ate a variety of vegetables for the first 15 days of weaning, had not eaten significantly more of the unfamiliar vegetable purée than the children from the control group. However in the UK, intervention children ate almost twice as much of the unfamiliar vegetable compared with control children whose parents were not advised to offer vegetables as first foods (32.8g vs. 16.5g). UK mothers and researchers also rated intervention infants’ as liking the vegetable more. Whereas in Portugal and Greece there was no significant effect of the intervention on infants’ intake of or liking for the vegetable. In all three countries, there was no difference between groups in the amount of fruit purée children ate or how much they seemed to like it.

    These results may be partly explained by variation in existing weaning practices across Europe. Common first foods given to UK infants include fruits and ‘baby rice’. Vegetables, particularly green or bitter tasting varieties, are offered less frequently. When they are introduced vegetable purées are often combined with fruits such as apple or pear, sweetening the food and potentially masking the vegetable flavour. In contrast vegetables are regularly offered as first foods in Portugal where vegetable soups are a common weaning food. These differences may be reflected in later dietary patterns as Portuguese school-children have some of the highest levels of vegetable intake in Europe.

    The findings of this study suggest that repeatedly offering a variety of vegetables to infants at the start of weaning may work to increase vegetable acceptance in countries where vegetables are not already given as first foods. However, we don’t know yet whether this effect will last throughout toddlerhood and into later childhood, so this will need to be explored in future studies.

    Reference: Fildes A., Lopes C., Moreira P., Moschonis G., Oliveira A., Mavrogianni C., Manios Y., Beeken R., Wardle J. & Cooke L. (2015). An exploratory trial of parental advice for increasing vegetable acceptance in infancy. British Journal of Nutrition. journals.cambridge.org/bjn/vegetabletrial