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.

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

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 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:

• An unusual lump or swelling anywhere on your body
• A change in the size, shape or colour of a mole
• A sore that won’t heal after several weeks
• A mouth or tongue ulcer that lasts longer than three weeks
• A cough or croaky voice that lasts longer than three weeks
• Persistent difficulty swallowing or indigestion
• Problems passing urine
• Blood in your urine
• Blood in your bowel motions
• A change to more frequent bowel motions that lasts longer than four to six weeks
• Unexplained weight loss or heavy night sweats
• An unexplained pain or ache that lasts longer than four weeks
• Breathlessness
• Coughing up blood

Signs of cancer for women:

• An unusual breast change
• Bleeding from the vagina after the menopause or between periods
• Persistent bloating

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

http://bjgp.org/content/65/631/e96

Vaccination is one of the best methods we have for preventing the spread of infection diseases. Thanks to vaccination, the last human case of smallpox was seen in 1977. Vaccination against polio has also made a lot of progress and the disease has almost been wiped out. Earlier last year, polio was only seen spreading between people in Afghanistan, Nigeria and Pakistan.

In 2006 a vaccine protecting against the human papillomavirus (HPV) was licensed. HPV is very common and in most people causes no problems. However, some people are not able to get rid of the infection. Lasting infection with HPV can cause cervical cells to change, and, if they are not treated, can lead to cervical cancer. Unsurprisingly, cancer researchers were excited when the vaccination was developed against the 2 types of HPV that are involved in most cases of cervical cancer. In 2008, vaccination against HPV was recommended by the UK Government for 12 and 13 year old girls in the UK. The vaccine currently being used in the UK childhood immunisation schedule also protects against anogenital warts.

Information from Public Health England tells us that most girls are getting the vaccine. However, research suggests that girls from Black and Asian ethnic minority backgrounds are less likely to get the vaccine than girls from White ethnic backgrounds. In the UK, children under the age of 16 need permission from their parents to receive vaccinations, so for us to be able to understand why girls from Black and Asian ethnic minority backgrounds aren’t getting the HPV vaccine, we need to speak to their parents. I have recently been given a Cancer Research UK – BUPA Cancer Prevention Fellowship to do three studies to look into this some more.

First, we will do an interview study with parents to work out why girls from ethnic minority backgrounds are less likely to get the vaccine. In the second study, we will develop tools to help parents make informed decisions about HPV vaccination. Finally, we will do a feasibility study to see whether a future randomised controlled trial is possible.

We want to make sure that the research we do it meaningful to the people we are studying. We would therefore like to speak to parents from Black and Asian minority ethnic backgrounds to help plan this research.

Parents can help us:
• Make sure that we plan studies that people would be happy to take part in;
• Work out how best to ask people to take part;
• Work out what the research findings mean;
• Tell other people about the research findings.
What will parents be asked to do?
• We would need parents to attend a group meeting to discuss the project.
• There will be two more meetings over the next three years that we hope they can join.
• Parents do not need any specialist knowledge – we will give them all the support they need.
What is in it for parents?
• We will give parents £25 as a thank you for their time.
• We will also pay for any travel costs of getting to the meeting.
• The meeting will last one hour and refreshments will be provided.
• The research team are happy to give talks to any community groups/schools as an additional thank you parents for their involvement.
We hope that parents will find being involved a fulfilling experience. The first meeting will be in late January 2015, and will be held at a time and place that is convenient to the parents involved. Eight community members will attend the meeting.

How can I get involved?
Please get in touch if you would like any more information or if you know of someone who might want to be involved. Dr Alice Forster – 0203 108 3293 – alice.forster@ucl.ac.uk

As I have discussed before, the relationship with cancer and weight is complicated. However, it is not only of interest to find out how weight impacts on cancer development, but also what happens to people’s weight once cancer is diagnosed and how this relates to cancer survival. For example, medication to treat cancer might make people more prone to weight gain. This could be problematic for people who are already overweight or obese before they were diagnosed with cancer, because an unhealthy weight has been linked to a higher chance of a cancer coming back. Alternatively, it is possible that a cancer diagnosis acts as a ‘teachable moment’ which may motivate people to change their lifestyle. This may help to avoid the cancer coming back after treatment.

Our researchers looked in two large studies, one with people from the UK, and one from the US, at how BMI changed over time in people diagnosed with cancer; and those who stayed cancer-free. Importantly, they also looked at how weight change differed according to people’s weight status before diagnosis, as emerging evidence has indicated that weight loss may improve the prognosis for cancer survivors who are overweight or obese at the point of diagnosis.

Over a four-year period, there was no difference in weight change between normal weight cancer survivors and normal weight cancer-free individuals in either the UK or the US. However, obese cancer survivors in the UK lost an average of 1.48kg vs. cancer-free obese individuals who lost an average of 0.25kg; and in the US, obese cancer survivors lost an average of 2.35kg in comparison to cancer-free obese participants who gained an average of 0.53kg. These results indicate that being diagnosed with cancer has little impact on weight in individuals who are a healthy weight, but is associated with significant weight loss among those who are obese.

Given that there was very little weight loss in normal weight cancer survivors vs. those who were obese, these results suggests that obese cancer survivors may have made a conscious effort to lose weight and to keep it off. However, it is also possible that people who were obese were diagnosed with cancer at a later stage (I discussed here why this is often the case), and that their weight loss was due to their cancer being more advanced, or treatment having taken a greater toll on the body. Unfortunately, the researchers had no data on the stage at which cancers were diagnosed, or whether the weight loss they observed was intentional, so we cannot say which of these options is true. It is important to do more research to see how weight loss relates to cancer survival to investigate whether keeping a healthy weight after a cancer diagnosis really has benefits for surviving longer.

Given that, on the whole, treatment for cancer is getting better, more and more people will survive cancer. Therefore, it is really important to find out what can be done for cancer survivors to improve their quality of life and to ensure that they remain cancer-free.

Reference:

Jackson SE, Williams K, Steptoe A & Wardle J (2014): The impact of a cancer diagnosis on weight change: findings from prospective, population-based cohorts in the UK and the US, BMC Cancer , 14:926  doi:10.1186/1471-2407-14-926

http://www.biomedcentral.com/1471-2407/14/926/abstract

As I have discussed previously, genetic technology is developing at a breath-taking speed. This not only means that scientists gain better insights in the genetic contributors to disease development, but also that this comes at increasingly lower costs.

Genetic testing is not new. In fact, it has been available on the NHS  for many years. However, to be eligible for testing, certain criteria have to be met; commonly, people need to have several affected relatives to qualify for genetic testing on the NHS.

Now, with falling sequencing costs, the question of whether it would be beneficial to offer genetic testing to everyone in the population before conditions manifest becomes ever more pertinent. Proponents of the proposal argue that current approaches based on family history may miss a proportion of individuals because both individuals and healthcare providers have to recognise that there may be an increased risk of disease – this can be challenging if the family is small, or people are not very actively seeking out this information. However, other experts are more cautious and argue that large-scale genetic testing has the potential to cause more harm than good. Regardless, there are many practical, social, legal and ethical questions that have to be sorted out before genetic testing can be applied at a population level.

Currently, in the clinical setting, genetic testing is only performed after thorough genetic counselling. Genetic counselling is defined as ‘a communication process, which aims to help individuals, couples and families understand and adapt to the medical, psychological, familial and reproductive implications of the genetic contribution to specific health conditions’. Genetic counsellors meet with people one-to-one and help them to make a decision whether or not they’d like to have testing. Although research to date has found that people commonly do not react badly to their genetic test results, genetic counselling is thought to play a large role in this because people would have discussed the possibility of an unfavourable result before they got testing. In addition, because people who get genetic tests to date come from high-risk families, they may to have thought a lot about their inherited risk. Therefore, they may be better prepared to cope with an unfavourable genetic test result.

However, if lots of people in a population got genetic testing, the one-on-one model of genetic counselling would be impossible to maintain because it is far too costly and time-intensive. Some experts are concerned that providing access to genetic testing without proper genetic counselling to people who may be largely unaware of their inherited risk would result in a high rate of adverse psychological effects such as worry and anxiety.

In the first study of its kind, our researchers wanted to find out what the effects of population-based genetic testing would be. They chose to look at the effects of returning genetic test results for risk of breast-and ovarian cancer (BRCA 1/2) in the Ashkenazi Jewish population. They picked this population because people of Ashkenazi Jewish descent have a higher chance to get breast-and ovarian cancer than people from other backgrounds and the mutations causing the increased risk are well-defined. People with one of these mutations have a very high chance to get cancer (50%-80% for breast; 20%-40% for ovarian).

Specifically, the researchers wanted to investigate i) whether population-based genetic testing would be able to identify a greater proportion of mutation carriers than the current family history approach, ii) whether people would find testing acceptable, and iii) what the psychological effects (e.g. on anxiety and depression) of genetic testing would be in people which may not necessarily have a strong family history of breast-or ovarian cancer.

Potential participants were recruited in the North London Jewish community. All individuals who registered their interest received genetic counselling before they enrolled into the study, and 1,034 (691 women, 343 men) decided to take part. Participants were randomly (by chance) split into two equally sized groups: In one group, all people would get genetic testing, and in the other, only people who would qualify for genetic testing under current NICE guidelines would get testing. However, this group could access testing after the end of the study if they wanted.

Our researchers asked questions about people’s anxiety levels, depression, and general quality of life before people got genetic counselling (baseline); immediately after study enrolment; and at seven days and three months after people got their genetic test results. The researchers also asked the same questions after one, two and three years after people got their genetic test results, but the results of this bit of the study have yet to be analysed.

In the group where all people were tested for their BRCA status, 13 carriers of a faulty gene were identified vs. 9 in the group which based the testing decision on family history; an increase in detection of 56%. In the family history group, 5 more carriers were detected after the study had finished. This means that current approaches are likely to miss a significant number of people of Ashkenazi Jewish descent who carry faulty BRCA mutations. As for adverse psychological effects, there were no differences between the 2 groups at either 7 days or 3 months after people received their genetic test results. In fact, overall anxiety and uncertainty decreased quite a bit, and positive experience scores increased.

This study is the first to provide evidence that large-scale genetic testing may be beneficial and feasible; at least in certain subgroups of the population. However, in this study, all participants received one-to-one genetic counselling before they enrolled; so it is not possible to say what the effects would have been using a less tailored approach. This might be something that could be investigated in future research. Nonetheless, these results demonstrate that large-scale genetic testing may have real clinical value, and they may spark serious debate about whether the current guidelines should be amended, at least for people of Ashkenazi Jewish descent. After all, identifying BRCA carriers early may save lives.

References:

Manchanda R, Legood R, Burnell M, McGuire A, Raikou M, Loggenberg K et al.: Cost-effectiveness of population screening for BRCA mutations in Ashkenazi Jewish women compared with family history-based testing. J Natl Cancer Inst 2015, 107.

Manchanda R, Loggenberg K, Sanderson S, Burnell M, Wardle J, Gessler S et al.: Population testing for cancer predisposing BRCA1/BRCA2 mutations in the Ashkenazi-Jewish community: A randomized controlled trial. J Natl Cancer Inst 2015, 107

In my previous blog post, I concluded that although a large majority of people take part in bowel cancer screening at least once, few do so consistently. Our latest research findings suggest that procrastination could explain this inconsistent behaviour.

The home-based stool test for bowel cancer screening is offered every two years to all adults living in England aged 60 to 74. Regular participation is important because the current screening test, the guaiac Faecal Occult Blood test, is not very sensitive (Soares-Weiser et al. 2007). Only regular participation has been proven to reduce bowel cancer mortality in randomised controlled trials (Hewitson et al., 2008).

Our latest study showed that returning the screening test kit after 28 days reduces the likelihood of screening participation in a subsequent invitation round. This effect was even observed among people who had taken part twice in a row. This suggests that even those with a proven track record are at risk of dropping out of the screening programme if they have a history of “procrastination”.

If someone has not returned the test kit after 28 days, the screening programme automatically sends them a reminder. Roughly one third of first-time participants are sent a reminder. However, if they fail to undertake timely action again, no further reminders are sent.

Perhaps we could think of screening procrastinators as “snooze button” users. Relying on the alarm clock to remind them repeatedly to get up, snoozers may eventually get caught out and truly oversleep. Unfortunately, we do not know for sure. What our study does not tell us is why people “procrastinate”.

One possibility is that procrastinators find the test particularly onerous. Another – although not necessarily mutually-exclusive – potential explanation is that they are procrastinators in other areas of their lives as well. Further study of the causes that underlie procrastinators to drop out of bowel cancer screening could help inform interventions to increase screening participation.

References

Hewitson P, Glasziou P, Watson E, Towler B, Irwig L (2008) Cochrane systematic review of colorectal cancer screening using the fecal occult blood test (Hemoccult): An update. Am J Gastroenterol 103: 1541-1549, doi: 10.1111/j.1572-0241.2008.01875.x.

Lo, S.H., Halloran, S., Snowball, J., Seaman, H., Wardle, J. & C. von Wagner (2014), Colorectal cancer screening uptake over three biennial invitation rounds in the English Bowel Cancer Screening Programme, Gut, Published Online First: 7th May 2014, doi:10.1136/gutjnl-2013-306144.

Lo, S.H., Halloran, S., Snowball, J., Seaman, H., Wardle, J. & C. von Wagner (2014), Predictors of repeat participation in the NHS Bowel Cancer Screening Programme, British Journal of Cancer, in press.

Soares-Weiser K., Burch J., Duffy S., St John J., Smith S., Westwood M., & J. Kleijnen (2007), Diagnostic Accuracy And Cost-Effectiveness Of Faecal Occult Blood Tests (FOBT) Used In Screening For Colorectal Cancer: a Systematic Review, York, United Kingdom: University of York.

In June 2013 you may have seen headlines about two new drugs that are going to be offered to women who are at an increased risk of breast cancer. These drugs, known as Tamoxifen and Raloxifene, were previously used by women who had been diagnosed with breast cancer as a way of reducing recurrence of the disease. Recent data suggest that these medications may be beneficial for women with a strong family history. As a result, the National Institute for Health and Care Excellence (NICE) has recommended that they be offered to women who meet a certain level of risk based on their family history and other factors.

Taking medications or any other natural, synthetic or biological agent to prevent cancer is known as ‘chemoprevention’. The NICE announcement was particularly exciting because it is the first time they have endorsed a medication for the primary prevention of cancer. While this raises a number of clinical issues, I have recently been given funding from Cancer Research UK to investigate what women think of breast cancer chemoprevention. Women who have been assessed by a specialist and told they are at an increased risk of breast cancer have a number of options, including taking Tamoxifen or Raloxifine. Alternatives include doing nothing, having routine surveillance by mammography or surgical intervention to remove the breasts and/or ovaries. You may have seen newspaper coverage of Angelina Jolie making a similar decision and here is her thoughtful piece on the issue. This decision is challenging, and there is no right or wrong answer. Instead, it must be based on women’s full understanding of the risks and benefits, as well as the values they assign to these factors.

In a joint collaboration between the Health Behaviour Research Centre, and the Centre for Cancer Prevention and funded by Cancer Research UK, I will be recruiting and following a group of women who have been asked to decide between these options. This study (known as the ENGAGE study) will help to identify how women are currently making these decisions, and what can be done to support them during this difficult process. Data from a number of questionnaires will be collected and after 1 year we will report on what decisions women have made and what their experience has been.

Chemoprevention is an exciting new area of research, but understanding the public’s opinion of it is vital if it is to be implemented effectively. So, if you’d like offer an opinion please feel free to leave a comment on our message board or contact me directly via e-mail (samuel.smith@ucl.ac.uk).

Sam (samuel.smith@ucl.ac.uk)

Most well-known for its link with cervical cancer, human papillomavirus (HPV) has been linked to a number of other cancers including some cancers of the head and neck.  The number of HPV-related head and neck cancers diagnosed in the UK has doubled in recent years so health professionals in this field are finding themselves having to talk to their patients about HPV.
Health professionals have an ethical obligation to ensure accuracy and transparency when explaining to patients that their cancer has been caused by HPV. But because HPV is sexually transmitted, discussing it could be a potential challenge for health professionals with little experience of discussing sex with their patients. In order to understand the experiences and challenges of talking to head and neck cancer patients about HPV, we interviewed fifteen health professionals (surgeons, oncologists, specialist nurses and allied health professionals) working in the field.
Most of the health professionals we interviewed did talk to their patients about HPV, but there were mixed views about the benefits of this. Some felt it was useful for patients to know the cause of their cancer, particularly because HPV-related head and neck cancer has a better prognosis than the more ‘traditional’ tobacco and alcohol-related cancers. Others felt that as patients’ HPV status would not affect their treatment, such discussions were unnecessary.
Health professionals discussed how HPV-related head and neck cancer patients can have different rehabilitation needs to those with head and neck cancer that’s caused by alcohol and tobacco because they tend to be younger and in better health. For example, one speech and language therapist said: ‘we’ve got a longer period of survivorship for younger people who are still actively employed and so their functional rehabilitation becomes a bigger issue’. The impact that an HPV-related diagnosis could have on relationships was also considered important.
Participants identified some key messages about HPV that they felt were important to include in their discussions with patients. Explaining to patients that HPV is very common and linked with normal sexual behaviour helped to normalise the infection. Drawing parallels with cervical cancer and mentioning the HPV vaccination had also been found to be helpful.
The range of experiences discussed suggests a need for clinical guidance to ensure that patients are receiving consistent messages. In line with a previous study of dentists in the United States, most of the health professionals we interviewed felt that additional training could help them improve their knowledge about HPV and their communication with patients. Further research is needed with patients to explore what being diagnosed with HPV-related head and neck cancer means for them.

Article link:
Dodd R.H; Marlow L. and Waller J. Discussing a diagnosis of human papillomavirus oropharyngeal cancer with patients: a qualitative study of health professionals Head and Neck
http://onlinelibrary.wiley.com/doi/10.1002/hed.23916/pdf