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    The HPV Vaccination: What’s preventing girls from being vaccinated?

    By Lauren Rockliffe, on 18 March 2015

    The number of girls receiving the Human Papillomavirus (HPV) vaccination is at an all-time high, according to a new report published this month by Public Health England; In the six years since the vaccine became routinely available over 2.3 million girls have received it, and in the last three years over 86% of girls offered the vaccine have received it.

    Despite these figures, previous research has shown that girls from Black and Asian ethnic minority backgrounds are far less likely to receive the vaccination than their White British counterparts.

    To find out why this might be happening, the EMPATHIC study has been set up; EMPATHIC is an interview study which aims to investigate parents’ opinions and experiences of HPV vaccination. The intention is to work out from these interviews what additional information or resources parents need to help them make an informed decision about the vaccination.

    What is HPV and why is the vaccination important?

    HPV is a common virus that affects the skin and moist areas that line the body (e.g. the mouth, vagina, anus) and is spread by skin to skin contact, including sexual contact. Around 8 out of 10 people will be infected with HPV at some point in their life but in most people the virus goes away on its own and doesn’t cause any symptoms. However, for some people the virus can cause cell changes which can increase the risk of some cancers.

    There are over 100 different types of HPV. Around 13 types can cause cancer and two types in particular (type 16 & 18) have been shown to cause most cases of cervical cancer (around 70% of cases). HPV is spread to the cervix through sexual contact and most infections are symptomless, so it is not obvious if someone carries the virus. Girls in the UK are offered vaccination against HPV to protect against these two types that cause cervical cancer.

    Girls are offered the HPV vaccination when they are in year 8 at school. It is offered to girls at this age because the vaccine is most effective if it is given before girls become sexually active. If their parents provide consent for them to have the vaccination they will have two injections spaced six months apart. The vaccination could prevent over 70% of cervical cancers. It’s therefore important for all girls to have the opportunity to get the vaccination.

    What does the EMPATHIC study involve?

    We are planning to conduct individual interviews with the parents of girls (who are in years 9 to 11 at school) from various backgrounds whose daughters have and haven’t had the HPV vaccine.

    We are working with schools and community groups in London who are helping us to contact parents that might want to be involved. We are also happy to for parents to get in touch with us if they think they might be right for the study.

    The interviews will last around 30 to 60 minutes. Parents will be asked to discuss their thoughts about the HPV vaccination and past experience of vaccination.

    What will happen after the interviews?

    After we’ve done all of the interviews (we’re aiming for 30 to 60) we will analyse the information and interpret the findings, which will hopefully result in some suggestions about what information or resources are needed to help parents make an informed decision about their daughter having the HPV vaccination.

    The next step will be to design some type of intervention based on what we find. This could be an information leaflet, text message reminders, or meetings held at the school, we don’t know yet; our decision will be based on our findings. Whatever intervention we develop will be tried out and we will evaluate how useful it is, to see whether it is something that could be used on a wider scale to help more parents make decisions about the vaccination.

    Get in touch!

    We’d like to hear your thoughts on the study. If you have any comments or are just interested in learning more, please contact Dr Alice Forster on 0203 108 3293 or at alice.forster@ucl.ac.uk.

    Article Reference: Public Health England (2015) Human Papillomavirus (HPV) Vaccine Coverage in England 2008/09 to 2013/14 (Report no. 2014797). London: Public Health England.

    The dark side and the bright side of cancer

    By Susanne Meisel, on 4 March 2015

    Cancer is a widely feared disease but outcomes are constantly improving, and last year Cancer Research UK reported that half of patients now survive over ten years. Much of this is due to improvements in treatment and catching cancer early, but is public opinion about cancer becoming more positive?

    We carried out a study using data from the International Cancer Benchmarking Partnership, which looked at the UK public’s attitudes towards cancer and how likely they are to believe negative and positive statements about it.

    Almost everyone was aware that early detection is important for survival and agreed that cancer can often be cured. However, at the same time some people also believed cancer is a death sentence and that they would rather not know if they have it. Their opinions about cancer were therefore very mixed, which has also been shown recently by an interview study. This could have to do with the different experiences people have of cancer and the range of cancer outcomes for different people and different cancers. Although we took into account whether people had personal experience of cancer (i.e. whether they had been diagnosed with cancer, or someone close within their family or friends had) in our analyses, we had not asked about the kind of experience they had (i.e. whether they had seen others survive, suffer or carry on with life as usual).

    The group most likely to hold these mixed opinions were those from socially deprived backgrounds, which we measured using highest level of education as a marker. Unfortunately deprivation still increases the chance of having worse cancer outcomes and perhaps this group struggle to reconcile their more negative experience of the disease with widely promoted early detection principles.

    This is important because research shows that negative beliefs about cancer may put people off going to their doctor with worrying symptoms or taking part in screening. If these negative beliefs about the chance of surviving cancer win over positive attitudes to early detection, they could become a self-fulfilling prophecy and help to maintain inequalities in cancer outcomes.
    So it seems that while positive messages about early detection have successfully been communicated, negative and fearful attitudes remain deep-seated. Health campaigns need more innovative and meaningful messages to target negative beliefs about cancer survival. Simply reiterating that beating cancer is possible may not be enough.


    Article Reference: Quaife SL, Winstanley K, Robb KA, Simon AE, Ramirez AJ, Forbes LJL, Brain KE, Gavin A, Wardle J. (2015). Socioeconomic inequalities in attitudes towards cancer: an international cancer benchmarking partnership study.  European Journal of Cancer Prevention. doi: 10.1097/CEJ.0000000000000140



    Lifestyle advice for cancer survivors: What are health professionals’ current practices?

    By Susanne Meisel, on 3 March 2015

    As more and more people are likely to get a cancer diagnosis, trying to find ways to manage the long-term effects of cancer becomes ever more important. Cancer survivors are not only at risk of their cancer coming back but they are also at risk of heart disease, osteoporosis (bone thinning), and diabetes.

    Making lifestyle changes following a cancer diagnosis may be one way to reduce some the long-term effects of cancer. For example, changing to a low-fat diet has been shown to reduce the chance of some types of cancer coming back. Similarly, being active after a cancer diagnosis may reduce the chance of getting one of the other conditions that are common in people with cancer. Stopping smoking also improves survival after a cancer diagnosis.

    In light of the evidence from these research studies, many cancer organisations have produced lifestyle recommendations for cancer survivors (http://www.macmillan.org.uk/information-and-support/coping/maintaining-a-healthy-lifestyle). However, it seems there is room for improvement in the number of people following these guidelines. Although health professionals may be in a good position to give advice on lifestyle changes after a cancer diagnosis, until now it was not clear which factors determine whether or not they do it.

    To find out, our researchers asked over 400 health professionals ranging from doctors, nurses and allied health professionals (e.g. dieticians and physiotherapists) questions on awareness of lifestyle guidelines for cancer survivors, current practices with regard to giving advice on smoking, diet, exercise, weight and alcohol, and things they felt would stop them from giving advice. Most respondents were nurses, and most worked with a range of different cancer patients.

    The results showed that although a proportion of health professionals (about one third of the sample) were not aware of any lifestyle guidelines for cancer survivors, most reported to give some form of lifestyle advice to their patients. However, often they discussed lifestyle with fewer than half of their patients and did not talk about all lifestyle behaviours. Respondents who were aware of lifestyle guidelines were more likely to give lifestyle advice on all lifestyle behaviours. In contrast, health professionals who believed that a healthier lifestyle would make little difference to cancer survival were less likely to recommend lifestyle changes to their patients.

    The study had a big sample which means that findings are unlikely to be due to chance. However, because people responded voluntarily, they may be more likely to be interested in lifestyle advice and cancer than other health professionals. In addition, because most respondents were nurses, it is impossible to say whether the results would be the same had we asked more doctors and allied health professionals.

    Nonetheless, these findings show that it is important to help health professionals keep up-to-date with the latest research findings on lifestyle and cancer survival because their endorsement may be important in motivating cancer survivors to make lifestyle changes.  In a previous study, our researchers have shown that cancer survivors would welcome this advice from health professionals. Making lifestyle advice a formal part of cancer care might help ensure that all cancer survivors are aware of this important information.


    Article Reference: Williams K, Beeken RJ, Fisher A, Wardle J: Health professionals’ provision of lifestyle advice in the oncology context in the United Kingdom. European Journal of Cancer Care. DOI: 10.1111/ecc.12305 b

    The lowdown on lung cancer stigma

    By Laura Marlow, on 17 February 2015

    Lung cancer is the second most common cancer in the UK with over 40,000 people diagnosed each year.  Smoking accounts for around 86% of lung cancer cases and studies have shown that most people are now well aware of the link between smoking and lung cancer risk.

    While public health campaigns have successfully portrayed smoking as an undesirable behaviour, stigmatising lung cancer seems to have been a by-product of this success. Studies suggest that many lung cancer patients feel stigmatised and the link with smoking is often offered as an explanation for this.  In a study published online last week, we show that lung cancer patients’ perceptions of stigma are reflected in the general population, with greater stigma attributed to lung cancer than to other cancer types.

    In our study, 1205 men and women answered questions about lung, skin, breast, bowel or cervical cancer.  The questions used were taken from the recently developed Cancer Stigma Scale  which assesses six dimensions of cancer-related stigma: Awkwardness, Severity, Avoidance, Policy Opposition, Personal Responsibility and Financial Discrimination.

    Participants  who answered questions about lung cancer generally gave higher ratings on the stigma scale than those who were asked about other cancers.  They rated lung cancer patients as more responsible for their illness and reported being more likely to avoid people with lung cancer.  They said they would feel more awkward around people with lung cancer, and were more tolerant of financial discrimination and lower levels of support for patients with the disease.  They also considered lung cancer to have more severe consequences than other cancers, which is consistent with the poor survival rates among lung cancer patients.

    There were some exceptions, for example personal responsibility was judged to be similar for skin and lung cancer patients, probably because of the role of sun exposure in skin cancer risk.  Perceived awkwardness scores were similar for bowel and lung cancer patients.

    Negative perceptions of lung cancer can have a negative impact on patient experience and funding contributions.  They may also have an impact on preventive behaviours among smokers, such as seeking medical help for cancer symptoms or participation in lung screening if this is introduced.  We need to find ways of limiting cancer stigma for patients, health professionals and the community, while still promoting public health messages about lifestyle based cancer prevention – perhaps a difficult balance to achieve.

    Article reference: Marlow LAV, Waller J, Wardle J. Does Lung cancer attract greater stigma than other cancer types? Lung Cancer, http://dx.doi.org/10.1016/j.lungcan.2015.01.024

    Can genetic feedback for risk of obesity prompt people to take action to prevent weight gain?

    By Susanne Meisel, on 16 February 2015

    Finally, the results of my randomized controlled trial are in.

    Just to recap, the question I tried to answer was whether knowing that having a gene related to obesity (FTO) would prompt people to take action to prevent weight gain. I tried to answer this using the ‘gold-standard’ method for this kind of question: The randomised controlled trial. I randomly (by chance) assigned over 1,000 students from UCL to one of two groups. One group received a leaflet with seven tips which would help them to prevent weight gain. The leaflet was based on Habit Theory (more about this here). The other group received the same leaflet, plus obesity gene feedback for one gene (FTO) which told them whether they were at ‘higher’ (AT/AA variant) or ‘lower’ (TT variant) genetic risk for weight gain. I found out their genetic risk using DNA from their saliva (they all had to be willing to spit into a tube!).

    One month later I sent both groups a questionnaire asking about their intentions to prevent weight gain, and any activities they were engaged in relating to weight gain prevention (e.g. eating slowly, controlling portion size, avoiding snacks, avoiding sweet drinks, exercising). They also completed a measure about their readiness to control their weight based on the stage of change theory.

    Although only 279 participants responded to my questionnaire, the study had still sufficient statistical ‘power’ to draw some meaningful conclusions. We statistically controlled for factors which could potentially explain differences between groups; in this case age, gender and BMI.

    Earlier studies have shown that genetic feedback can influence behaviour change intentions, regardless of whether the actual result is ‘low’ or ‘high’ risk. This might be because the results give personal feedback, which may itself be motivating. This is why we thought that gene feedback (vs. no feedback) would have an effect on people. And we were right – participants who received genetic feedback in addition to their weight control leaflet were more likely to think about taking some action to prevent weight gain. In particular, people who were already overweight (BMI < 25kg/m2) and received genetic feedback were more likely to report that they had started to do something to prevent weight gain than overweight people who did not receive gene feedback.

    We then looked at differences between ‘higher risk’, ‘lower risk’, and ‘no feedback’ groups. Participants who received a ‘higher’ genetic risk result were more likely to report that they were thinking about doing something to control weight gain, or that they had started than people who received ‘no feedback’. There was a small difference between people who had ‘higher’ and ‘lower’ genetic risk results. Importantly, people who got ‘lower risk’ results were just as likely to think about preventing weight gain than those receiving ‘no feedback’. However, when we looked at whether people had actually followed the weight gain prevention behaviours outlined in the leaflet, there was virtually no difference between groups; most people were not following any of the behaviours despite their intentions.

    This is the first trial that has had enough participants to show any group differences with some certainty. It also aimed to show effects in a ‘real world’ scenario, with young, healthy people who were largely unaware of their genetic risk. However it also had some very important weaknesses.

    We did not assess people’s weight control intentions when they enrolled in the study because it would logistically have been quite challenging, so we couldn’t see if people’s intentions had changed. We also used only one question to make assumptions about their weight control intention. This is not such a good idea, because people sometimes give random answers, and self-report has its own problems – in hindsight it would have been better to use more questions because that allows us to check whether people answer consistently. Another limitation was that we could not have a ‘no treatment’ control group who received neither leaflet nor gene feedback. This was mainly because our study used lots of first year students who all lived in halls together; therefore, there would have been a high chance that people assigned to a ‘control group’ would have read the leaflet anyway. In addition, lots of people did not return the questionnaire. Although we expected this, it limits what we can actually say about how most students would react. People were more likely to enrol in the study if they were not overweight, and were less likely to answer the questionnaire if they were overweight at the start of the study. This means that our results may be different for these students compared to the wider student population, but we don’t know for sure. Lastly, and perhaps most importantly, I only chose to give them feedback on one (albeit well-established) obesity gene – although we know that there are hundreds of genes which influence body weight. This means that it might not be very meaningful for an individual to know whether or not they have just one of these genes – they may have many others. However, I was mainly interested whether gene feedback could ‘in principle’ be used to help people starting to prevent weight gain early, or whether it had any negative effects.

    What to make of this? The study showed that FTO feedback can influence weight gain prevention intentions, but has no effect on actual behaviour. Sadly, showing that interventions change intentions but not behaviour is common in behaviour change research. In fact, it is so common that it has a name: The ‘intention-behaviour-gap’. I am sure that most people will be familiar with the concept: You really want to do something (i.e. going to the gym, or cleaning the bathroom), but then, for one reason or another, you fail to follow through with it. In that sense, findings from the study are in good company, since lots of other studies have shown similar things, be it on the effects of genetic test feedback, or on other topics. Unfortunately, researchers are as yet not very good in explaining how to bridge the ‘intention-behaviour-gap’. This is why we thought that genetic test feedback could be a novel way – especially since it is very compelling and rational to assume that once a person knows about their elevated risk for a condition, that they would take steps to prevent it. However, as it is so often the case with human behaviour, it seems that it is not so straightforward. A more optimistic explanation is that participants did not feel the need to act on their results at this point in time – after all, most had a healthy weight – but would keep the results in mind and take action should they gain weight. Since genetic testing for common, complex conditions is still relatively novel, data on the long-term behavioural effects is still lacking.

    The good news is that a ‘lower’ risk result did not result in ‘complacency’ – the false assumption that weight gain is not possible with a ‘lower’ FTO gene result. People seem to have a pretty good idea that many genes, and the environment, act together to influence weight gain, so regardless of their result they were motivated to think about preventing weight gain as a consequence of getting feedback.

    It will now be important to find out how we can get better at communicating gene results to people, so they may have some impact on behaviour –genomics is undoubtedly here to stay, so this will be an important task for the future.
    Article reference: Meisel SF, Beeken RJ., van Jaarsveld CHM., & Wardle J Genetic susceptibility testing and readiness to control weight: results from a randomized controlled trial in university students. Obesity, 23, 2, 305-312. DOI: 10.1002/oby.20958

    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.

    A cancer false alarm could discourage people from checking out future symptoms

    By Susanne Meisel, on 6 February 2015

    As I have discussed here, delays in a diagnosis of cancer are one reason why the UK fares worse in cancer survival than other countries . This has led to campaigns like this one to remind the public to go and get symptoms checked out early. However, most people who go and have tests will ultimately get the ‘all-clear’- in other words they will not be diagnosed with cancer. This is of course good news, however having experienced a false alarm might have some unintended consequences. It may impact on mood and anxiety levels long after the all-clear has been given. What’s more, a false alarm may influence future symptom appraisal because it may lead people to think that it’s just another false alarm, so they won’t bother to go to the GP again.

    Our researchers looked at all available research studies which reported information on false alarms and subsequent symptom attribution or help-seeking published between 1990 and February 2014 to see whether this assumption was true. They included only studies that looked at adult patients who presented with symptoms and did not include studies where additional tests were required after routine cancer screening, because the effect of a false alarm may be different in this context.
    Our researchers found 19 national and international studies that met their criteria. Six of these were carried out in the UK, three in other European countries, six in the USA, three in Canada and one in Australia. The most frequently studied cancer was breast cancer, followed by gynaecological, bowel, testicular, head and neck, brain cancer and multiple cancer sites.

    Our researchers found that, as predicted, people often explained a delay in seeking help for a symptom due to being overly reassured by a previous false alarm. This was true across different types of cancer. Interestingly, a previous false alarm often resulted in normalising novel symptoms and attributing them to the previous benign diagnosis even in the case of symptoms occurring months or years after the false alarm. This finding is concerning, because having had an all-clear diagnosis in the past does not guarantee that you won’t develop cancer in the future. Therefore, it is really important to remain vigilant and go and get checked every time a new symptom appears, or a symptom won’t go away.

    Feeling ‘foolish’ and under-supported the first time help was sought for a symptom was another important theme that emerged from the review. Patients who felt dismissed, and who felt that they did not get enough explanation about what to do if the symptoms did not go away or if new symptoms appeared were less likely to seek help in the future.

    However, there were some limitations to the review – for example our researchers might have missed some studies as in the majority of cases they were not directly investigating the effects of false alarms; moreover, the ones they did find were based on small number of patients who were interviewed after they had been diagnosed with cancer . Therefore, we are planning to do some more research in the future which will specifically focus on the topic.

    These findings highlight how important it is to provide balanced information to patients when they are investigated for possible cancer symptoms, making sure not to cause unnecessary anxiety and at the same time avoiding false reassurance. Furthermore, the results show that it is important to take patients’ concerns seriously and encourage patients to see a doctor promptly if they have new possible cancer symptoms or if symptoms don’t go away even if they have been checked before. Early diagnosis will only be successful if patients feel assured that they are not perceived as hypochondriacs or wasting the GP’s time.

    Article Reference:Renzi C, Whitaker KL, Wardle J: Over-reassurance and undersupport after a ‘false alarm’: a systematic review of the impact on subsequent cancer symptom attribution and help seeking BMJ Open 2015;5:2 e007002 doi:10.1136/bmjopen-2014-007002   http://bmjopen.bmj.com/content/5/2/e007002.full#ref-11



    UCL Qualitative Health Research Symposium: “Enriching qualitative inquiry in health”

    By Charlotte Vrinten, on 4 February 2015

    Interest in qualitative approaches to health research is growing.  This is a welcome endorsement of its contributions, but there may be tensions between the philosophies and practices of qualitative approaches, and those of a prevailing, quantitatively-oriented health research culture.

    Following the success of a jointly organised 2013 symposium, qualitative research groups at UCL’s Health Behaviour Research Centre, Department of Applied Health Research (DAHR), and the Division of Psychiatry are organising their second symposium dedicated to qualitative health research: “Enriching Qualitative Inquiry in Health”.

    This symposium will be held on Wednesday 18 February 2015 from 9:00-17:00 and will include a range of national and international speakers, as well as a key note address by Dr Sara Shaw (Queen Mary University of London).  Attendance is free, but registration is essential.

    • The full programme of the day can now be found on the HBRC website.
    • For more information about how to register, go to the DAHR website.
    • For background and context of the day, see the Division of Psychiatry blog.
    • Some examples of qualitative research conducted by the HBRC can be found here.

    Cancer fear impacts bowel cancer screening uptake

    By Charlotte Vrinten, on 29 January 2015

    Our last blog post already mentioned it: catching cancer early is important because it gives a better chance of survival.  One of the ways in which we can achieve this is to make people aware of symptoms that could be cancer and urge people to have them checked out by their GP.  Another important tool to catch cancer early is through cancer screening.  However, fear of cancer may deter some people from seeing their GP or attending screening.

    Numerous studies have shown that cancer fear influences how people respond to a possible cancer symptom[1] or to an invitation to attend cancer screening[2].  Although many people are afraid of getting cancer, fear doesn’t have the same effect on everyone.  For some people, cancer fear motivates them to get checked up, for others, it puts them off from finding out whether they have cancer.

    In our study[3], we tried to find out why fear may have such opposite effects.  We suspected that there might be different aspects to cancer fear, which make people behave in different ways.  So instead of using a combined measure of cancer fear, we distinguished between these different aspects of fear to see whether they had different effects on people’s decisions about cancer screening.

    We recruited nearly eight thousand participants aged 55 to 64 years from the UK Flexible Sigmoidoscopy Trial[4] into a psychological sub-study on cancer fear.  Overall, 59 percent said they were more afraid of cancer than of other diseases, 53 percent felt uncomfortable when thinking about cancer, and 25 percent worried a lot about cancer.  We then asked them whether they would take up an offer of colorectal cancer screening if invited and 82% of them said they “probably” or “definitely” would.  Worriers and those who feared cancer more than other disease were more likely to say that they would attend screening.

    Nearly 2,000 participants were randomised to receive a screening invitation and 71% of them actually attended their appointment.  There were no differences in attendance between worriers and non-worriers, or between those who feared cancer more than other diseases versus those who did not, but those who felt uncomfortable thinking about cancer were 12% less likely to attend screening.

    So what do these results tell us?

    First, twelve percent may not seem like a lot, but because tens of thousands of older adults in the UK are eligible for this type of screening, it means a big difference in the number of people attending.

    Second, it helps us understand why some people may not follow through on their intentions, a phenomenon known as the intention-behaviour gap.  In our study, 82% of participants said they would attend bowel cancer screening, but only 71% of this group actually turned up for the test when they were invited.  We showed that those who felt uncomfortable thinking about cancer were less likely to follow through on their intentions to get screened.  This knowledge might help in the design of effective public health messages about cancer screening.

    Finally, public campaigns often focus on increasing public fear about cancer, for example, by emphasising how common cancer is or how deadly some types of cancer are.  This might put some people off, rather than motivate them to get screened. Public information about endoscopic screening for bowel cancer should help people understand that it can actually prevent bowel cancer, so having the test can mean they have one less cancer to worry about.

    1. Dubayova, T., et al., The impact of the intensity of fear on patient’s delay regarding health care seeking behavior: a systematic review. International Journal of Public Health, 2010. 55(5): p. 459-68.
    2. Hay, J.L., T.R. Buckley, and J.S. Ostroff, The role of cancer worry in cancer screening: a theoretical and empirical review of the literature. Psychooncology, 2005. 14(7): p. 517-34.
    3. Vrinten, C., et al., Cancer fear: facilitator and deterrent to participation in colorectal cancer screening. Cancer Epidemiol Biomarkers Prev, 2015. Epub ahead of print.
    4. Atkin, W.S., et al., Once-only flexible sigmoidoscopy screening in prevention of colorectal cancer: a multicentre randomised controlled trial. Lancet, 2010. 375(9726): p. 1624-33.

    Catching cancer early – how people make decisions about their symptoms and seeking help from their GP

    By Susanne Meisel, on 26 January 2015

    Catching cancer early is important because it gives a better chance of survival. Although the UK has one of the best heatlhcare systems in the world, it still does worse for cancer survival one year after diagnosis than other countries with a similar standard of care. One reason for this is that cancer is often found at a later stage, and is therefore more difficult to treat.

    Researchers are trying to work out what contributes to a late cancer diagnosis. One factor could be delays in the time it takes the GP to refer a patient to see a specialist. This is why guidelines have been developed to make sure that patients are seen within a reasonable time period . However, for the GP to make a referral, the patient has to present with a symptom in the first place. For that to happen, people need to recognise their symptoms as serious enough to make an appointment to get it checked out. A big part of our research at the HBRC tries to find out what factors stop people from going and seeing their GP when they have symptoms that might be signs of cancer.

    In studieswhere people are specifically asked about cancer and cancer symptoms, they are usually pretty good at listing at least a few. They are even better if the symptoms are already listed and they just have to recognize them as potential signs of cancer. However, in studies where cancer patients have been asked about what led to their diagnosis, many have said that they did not recognise their symptom as a sign of cancer at first and therefore saw no need to go and see the GP; although fear of a cancer diagnosis was also sometimes mentioned as a reason not to go and see a GP .

    This shows that, as often, the research studies may not actually reflect what happens in the ‘real world’. Given that many cancers have quite varied symptoms that could be due to lots of causes, such as bloating, change in bowel habits, unexplained bleeding or a persistent cough, it is not surprising that many people may not link these to something as serious as cancer. Others, such as lumps, may be more recognisable.

    It appeared that once people had thought about cancer, they could tell which symptoms were related. However, our researchers tried to find out whether people would think of cancer as a potential cause for a symptom without any prior prompting.

    This study was part of a larger survey study, where people answered lots of questions about their health, including any symptoms that would not go away within the last three months. Our researchers were especially interested in responses of people who were over the age of 50. This was because cancer risk goes up with age. Therefore, it is more likely that symptoms are caused by cancer.

    Our researchers selected 48 men and women of different ages, ethnicities and social backgrounds who had agreed to be interviewed. They were asked to describe the experience of their symptoms, why they thought it was happening, who they had asked for advice and what they had done about it. Crucially, cancer was never mentioned, to make sure that people would not be set up to think about it. However, the researchers would point out to people that they should get their symptoms checked after the interview.

    Only about half of the people interviewed had seen the GP about a symptom. People were most likely to seek help from the GP when they had persistent bleeding. Fewer people sought help for a sore that does not heal or a persistent cough. People sought help because they thought that a symptom was serious, out of the ordinary, and because they had a ‘gut-instinct’ that something wasn’t right. Often, they also mentioned that they had talked about their symptoms to friends and relatives, and that they had encouraged them to see a GP. For example, one participant described how his persistent coughing woke up his wife who told him to go and do something about it. However, how people defined ‘persistent’ varied a lot – sometimes they had a symptom for many years, before they went and sought help for it. People also went to the GP once they had thought about cancer as a possible cause for their symptom. For example, they saw cancer awareness campaigns, which then made them realise that their symptom may be serious.

    People who did not seek help for their symptom thought that it was nothing serious. Often they just attributed it to getting older, and there was an assumption that the body wasn’t as good at repairing itself. Many also had a stoic attitude (“stiff upper lip”) to their symptom, and there was a perception that going to see the doctor would be a sign of weakness, and that they would be seen as ‘timewasters’. This attitude often led people to tolerate quite severe symptoms, such as severe diarrhoea, or visible lumps. To a lesser extent, some had negative attitudes towards the healthcare system, and did not believe that the doctors could do anything about their symptom.

    Interestingly, the findings did not differ between men and women and between people from different social backgrounds; although this might have been because we only asked a small number of people about their opinions.

    This study thus offers some potential explanations for UK’s struggle with early detection of cancer. Cultural norms (‘stiff upper lip’), lack of knowledge about symptoms, putting symptoms down to old age, as well as fear of a cancer diagnosis, are all contributing factors. It is important to continue making people aware about the warning signs of cancer. The recent campaigns by the major cancer charities therefore seem to be on the right track. It may also be important for GPs to encourage their patients to come and see them if a symptom doesn’t go away, to counteract concerns by patients that they may be seen as ‘timewasters’. This may be especially true for the elderly, who may be more prone to avoid medical care unless absolutely necessary.

    What are the Warning Signs of cancer? (Source: CRUK)

    Signs of cancer for men and women:


    Signs of cancer for women:

    Article reference:  Help seeking for cancer ‘alarm’ symptoms: a qualitative interview study of primary care patients in the UK
    Katriina L Whitaker, Una Macleod, Kelly Winstanley, Suzanne E Scott, Jane Wardle
    British Journal of General Practice Feb 2015,65(631)e96-e105;DOI: 10.3399/bjgp15X683533