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

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

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

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

Article link:

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

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

What is HPV and how is it linked to cancer?

Around 5% of all cancers worldwide are caused by the human papillomavirus (“papi-lo-ma-virus”) or HPV. More and more people are aware that HPV causes cancer of the cervix (the neck of the womb) in women, but HPV can also cause cancers of the penis, anus, vagina, vulva and mouth and throat. The virus is spread by skin to skin contact, including sexual contact. There are many different types of HPV. Some types cause cancer, while others cause warts that people get on their hands, feet or genitals and these types do not cause cancer. The types of HPV that cause cancer are so common that HPV is the most frequent sexually transmitted infection in the UK. In most people the cancer causing types of HPV cause no problems and the virus goes away on its own. However, some people do not get rid of the infection. If the infection stays for many years it can turn into cancer.

HPV vaccines

In the late 1990s and early 2000s two vaccines were developed that protect against the two types of HPV that cause around 80% of cervical cancers. Girls who are aged 12-13 years old in Year 8 at school are now offered one of these vaccines as part of the childhood immunisation programme. The vaccine that is used as part of the UK programme also protects against two types of HPV that cause genital warts. Recently, a third HPV vaccine called the nonavalent or 9-valent vaccine has been licenced for use in the UK, as well as in the USA and elsewhere in Europe.

The new 9-valent vaccine

The 9-valent vaccine, as the name suggests, protects against 9 types of HPV – that means protection against an extra 5 HPV types compared with the other two vaccines. These 9 HPV types cause up to 90% of cervical cancers, so an additional 10 in every 100 cervical cancers could be prevented.

Where does behavioural science fit in?

The invention of these vaccines is a fantastic step forward towards wiping out cervical cancer, but this can only happen if people get the vaccine and we know that many people are not doing so for a variety of reasons. The benefits of the HPV vaccine will be greatest if most people get the vaccine, however as with all healthcare decisions, the decision to get the HPV vaccine should be an individual informed choice. In our new paper, we look at how we can use our understanding of why people don’t get vaccines, specifically the HPV vaccine, to try to increase uptake of the 9-valent vaccine.

Reason 1: Will the 9-valent vaccine overload the immune system?

Some parents worry that vaccines overload the immune system and others worry that particular ingredients make vaccines risky for their children. Parents consider combination vaccines to be risky for both of these reasons as they are seen as containing a greater number of ingredients. The 9-valent vaccine is not a combination vaccine, but it protects against 9 types of HPV compared to 2 or 4 types of HPV with older HPV vaccines and might be seen as more dangerous. However, parents should be reassured that the 9-valent vaccine is safe and has been licensed for use in the UK, USA and the rest of Europe. There is also no evidence that vaccines overload the immune system.

Reason 2: ‘I’ll wait to decide until there’s more evidence that it will protect my daughter in her twenties’

Many parents have said that rather than giving their 12 or 13 year old daughter the vaccine (as recommended) they would rather wait until their daughter became sexually active so that she may be protected when she ‘really needs it’. However, the HPV vaccine is likely to give protection against HPV for decades and works better if it is given at a younger age. Parents may also find it difficult to get the vaccine for their daughter outside of the routine immunisation programme. Parents should be reassured that 12 to 13 is the right age for their daughter to get the 9-valent vaccine.

Reason 3: ‘It’s so new, the government can’t know about the long-term side effects’

Because the vaccine is relatively new, some parents say that they are worried that the vaccine has not been monitored for long enough. However, vaccines go through many years of testing before they become available to the public. There is no evidence that the HPV vaccines are unsafe or cause side-effects other than temporary mild/moderate pain, swelling, redness and itching.

What else can be done to increase uptake of the 9-valent vaccine?

Scientists have looked at all of the published research studies that have tried to improve uptake of HPV vaccines. These show that uptake can be improved by doing things like sending reminders to parents and running school-based immunisation programmes like we have in the UK. In the USA, where the vaccine is given in a clinic setting, parents are most likely to get their daughter vaccinated if a doctor recommends that she has it. The language that the doctor uses to make that recommendation is also important.

The 9-valent HPV vaccine is a fantastic opportunity to prevent even more cancers that are caused by HPV. Parents can be reassured that the HPV vaccines are safe and will provide protection for their children against a number of cancers for many many years.

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

Encouraging people to seek help

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

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

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

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

What did we find?

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

What next?

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

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

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

Authors: Amanda Chorley and Jo Waller

If you are a woman aged 25 or over, there is a good chance you have attended cervical screening (the smear or Pap test) at least once. In England last year, just under three quarters of women were ‘up to date’ with cervical screening [1], meaning that over a quarter of women are not up to date. As cervical screening, in addition to HPV vaccination, is one of the best ways to protect yourself from cervical cancer it is important to understand why some women do not attend.

Many studies have asked women about their feelings towards and experiences of cervical screening. We carried out a review of studies [2] from the UK, Australia, Sweden and South Korea – countries where women are automatically invited for screening on a regular basis.

By pulling together findings from across 39 studies, we identified two main themes. Firstly women considered whether they should go for screening – were they at risk of cervical cancer? How serious was the outcome? And is screening a useful way of dealing with that threat? Secondly, women who had previously been for screening recounted their experiences, and how this made them feel about going again.

Should I go for screening?
In deciding whether they should go for cervical screening or not, women considered whether they were at risk of cervical cancer, and therefore if screening was relevant to them. Their decisions were often based on ideas of the causes of cervical cancer, such as number of sexual partners. Women also considered their current life stage (both biological such as menopause, and social such as being the mother of young children), and their family history of cervical (and other) cancer.

Women differed in whether they thought cervical screening was worthwhile. Some talked about the benefits of early detection of cancer (e.g. better survival or ‘peace of mind’). Others believed that they would know if they had an illness as serious as cancer, without screening, or were cynical about the motives of screening programmes. The final group were aware of screening, but were unsure of its importance. These women were often from more deprived backgrounds, or were from ethnic minority groups.

Screening is a big deal
It was clear from women’s accounts that one bad experience of screening could make them avoid screening in the future. However it is important to remember that it is possible that women who have had bad experiences are perhaps more likely to take part in studies about screening than women who do not view screening as a big deal.

Some women found the prospect of screening threatening, either through the risk of being given a diagnosis of cervical cancer, the belief that you might get an infection from unclean instruments, or through the anxiety screening and the wait for results could cause. Some women reported a different kind of threat. It was believed that a positive result could mark you as “promiscuous”, and for some women (especially those from ethnic minority groups) simply attending screening could suggest to other people that you were sexually active.

Cervical screening was also seen as a big deal because of physical aspects, such as pain, or disliking the speculum. For others emotional aspects were more important. In particular, some women reported feelings of embarrassment, shame, and a loss of control during screening, due to the unusual situation in which you are expected to expose your genitals to a relative stranger.

Because of this, women across studies had a strong preference for female nurse or doctor for cervical screening.

Other factors
These are not the only reasons women do not attend screening. Some women talked about how they would like to go for screening, but competing priorities, such as childcare and work, or inconvenient appointment times or clinic locations meant that they could not easily attend. Women from ethnic minority groups also reported specific problems, such as racist treatment from health professionals, and difficulty in accessing information about screening due to a lack of translated material.

What does this mean?
Our findings show that women are not all alike in their reasons for not attending screening. Some do not think screening is relevant for them and have made a conscious decision not to go. Others have had a bad experience and wish to avoid that happening again. Yet other women would like to attend screening, but life gets in the way. And of course cervical screening is not a one-off event. Women will continue to be invited over a period of decades, and factors that were important at one stage of a woman’s life may be more or less important in the future.

Knowing this allows us to develop different kinds of information and support for women depending on which factors are most important to them. We are now also able to carry out further research to try and find out whether certain factors are more likely to be considered important by certain groups of women. Our review also made it clear that the opinions of women who have never attended, or even heard of screening, have hardly been explored. We hope to interview women from these groups in the coming months, and find out more about their barriers to cervical screening.

[1] Screening and Immunisations team HaSCIC. Cervical Screening Programme, England. Statistics for 2014-15. 2015.

[2] Chorley AJ, Marlow LAV, Forster AS, Haddrell JB, Waller J. Experiences of cervical screening and barriers to participation in the context of an organised programme: a systematic review and thematic synthesis. Psycho-Oncol. 2016.

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

In our last blog, we talked about ‘overdiagnosis’, a concept that many people are unfamiliar with – that is, when a medical test finds an illness that would never have caused any harm during a person’s lifetime.

As a follow-up study, we were interested in how much information the UK and Australian public could find online about overdiagnosis in the specific context of breast cancer screening.

Why breast cancer screening?

We chose breast screening because it is a setting in which the issue of overdiagnosis has received a lot of attention in the UK in recent years: in 2011, Cancer Research UK and the Department of Health commissioned a review of studies with the aim of understanding how much overdiagnosis happens in breast screening.

Likewise, the NHS recently made substantial changes to the information leaflets provided to women invited for breast screening, with the aim of ensuring that they would understand that overdiagnosis was one possible outcome of being tested.

Breast screening sometimes diagnoses ‘ductal carcinoma in situ’ or ‘DCIS’, which is an abnormality that can become a symptomatic cancer over time. However, it can also be slow growing and never pose a health risk, meaning that a large proportion of overdiagnosis in breast screening is due to DCIS.

As well as finding out what kind of information people could find about overdiagnosis on health websites, we were interested in what explanations those websites provided about DCIS, and also what kinds of statistics were used to give the public a sense of how many people are affected by overdiagnosis.

We used a Google search for ‘breast cancer screening’ to find the most relevant health websites in the UK and Australia (such as NHS Choices and Cancer Australia). We examined in detail ten websites from the UK and eight from Australia.

What did we find?

Our main findings were that most UK websites included some information about overdiagnosis and also DCIS. The websites provided a range of statistics stating, for example, that every year around 4,000 women in the UK are overdiagnosed and overtreated following screening and that around 3 in 200 women screened would be overdiagnosed and overtreated (considering women aged between 50 and 70 years undergoing screening every three years).

Such information was available less often on Australian websites, although the kind of information was similar when it was present (and several websites linked to more detailed websites instead of hosting the information themselves).

Why is this important?

One reason for doing this research was that a similar study had been carried out more than ten years ago in 2000, showing that overdiagnosis and DCIS were rarely described. We thought that things might have changed in the meantime as more and more people use the internet to understand health issues.

In fact, we found that although not every piece of information on overdiagnosis and DCIS is available on every website, it is more available than it was in the past. In time, this might lead to a greater level of public awareness about the issue.

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

In recent years, doctors and academics have become more and more interested in a problem referred to as ‘overdiagnosis’. There are several ways that overdiagnosis can be defined.

One particularly useful way is to think of it as the diagnosis of a disease that would never have caused a person symptoms or led to their death, whether or not it had been found through a medical test. In other words, even if a person had not had the test, the disease would never have caused them any harm.

Catching it early

It may not be obvious how this can happen. As an example, imagine a woman going for breast screening, which tries to find cancer at an early stage, before it starts causing symptoms.

The thinking behind this type of test is that if the disease is found early, it will be easier to treat and there is a higher chance of curing it. Most people are familiar with this idea that ‘catching it early’ is a good thing.

So, suppose a woman who has no symptoms goes for screening and the test finds cancer: she would usually go on to have treatment (e.g. surgery).

However, although she has no way of knowing for sure, it is possible that the cancer was growing so slowly that she would have lived into old age and died of something unrelated, without ever knowing about the cancer, had she not gone for screening.

The cancer is real but the diagnosis does not benefit the woman at all; it results in treatment that she did not need (‘overtreatment’). In fact, if she had not had the screening test, she would have avoided all the problems that come with a cancer diagnosis and treatment.

What research has found

If you find the idea of overdiagnosis counter-intuitive, you are not alone. Several studies have tried to gauge public opinion on the issue and found that this is a fairly typical view, partly because the notion that some illnesses (like cancer) might never cause symptoms or death is one that does not receive much attention and is often at odds with our personal experiences.

Results from an Australian study in 2015 found that awareness of ‘overdiagnosis’ is low – in a study of 500 adults who were asked what they thought it meant, only four out of ten people gave a description of the term that was considered approximately correct and these descriptions were often inaccurate to varying degrees.

For example, people often thought in terms of a ‘false positive’ diagnosis (diagnosing someone with one illness when really they do not have that illness at all), or giving a person ‘too many’ diagnoses.
Is this the same in the UK?

We wanted to find out whether this was also true in the UK. We asked a group of 390 adults whether they had come across the term ‘overdiagnosis’ before and asked them to describe what they thought it meant in their own words, as part of an online survey.

We found that only a minority (three out of ten people) had encountered the term and almost no-one (10 people out of all 390) described it in a way that we thought closely resembled the concept described above.

It was not always clear how best to summarize people’s descriptions but we found that people often stated that they had no knowledge or had similar conceptions to the Australian survey such as ‘false positives’ and ‘too many’ diagnoses.

Some descriptions were somewhat closer to the concept of overdiagnosis such as an ‘overly negative or complicated’ diagnosis (e.g. where the severity of an illness is overstated) but there were also some descriptions that we found more surprising such as being overly health-conscious (e.g. worrying too much about health issues).

Room for improvement

Many people who work in public health and healthcare believe that people should be aware of the possibility of overdiagnosis, particularly since they will eventually be offered screening tests in which there is this risk.

In this respect, our findings show that there is substantial room for improvement in how we inform the public about overdiagnosis. In part, this may be due to the term itself not having an intuitive meaning, in which case other terms might be more helpful (for example the term ‘unnecessary detection’).

This could be tested in future studies. Our findings also motivated us to find out the extent to which trusted information sources (such as websites run by the NHS and leading health charities) are already providing information on overdiagnosis.

We would like to share the findings from this study in a follow-up blog post. We will be posting this here soon.

This was originally posted on the BioMed Central blog network.

Human papillomavirus, or HPV as it’s more commonly known, is an infection that most sexually active people will get in their lifetime. We know that the high-risk types of HPV (e.g. HPV-16 and HPV-18) are often sexually transmitted and in some cases, albeit very few, it can lead to cancer if our bodies don’t get rid of it. It’s probably most well known as the cause of cervical cancer, as the HPV vaccination was introduced in 2008 and is available to all girls aged 12-13. But it has also been shown to cause other cancers, such as oral cancer, penile cancer and anal cancer.

When HPV was increasingly found to be the cause of cervical cancer, researchers looked into the psychological impact this could have on women being given this information. Research carried out with women taking part in HPV testing at cervical cancer screening has shown that the sexually transmitted nature of HPV can lead to women feeling stigma, anxiety, concern about their relationships and worry about telling others about their test result. Some women also reported a reduction in sexual enjoyment and frequency of sex. Because of the additional challenges faced by women with cervical HPV, people now recognise a need for some guidance on how best to discuss HPV with oral cancer patients.

Patients with HPV-related oral cancer are typically younger than those whose oral cancer has been caused by tobacco or alcohol. They tend to be white, male, married, educated and employed. The risk of getting a HPV-related oral cancer is higher if individuals have had a greater lifetime number of sexual and oral sex partners, due to greater exposure to HPV.

Unsurprisingly, research shows that a diagnosis of head and neck cancer causes psychological distress. Telling patients that they also have HPV could make them worry even more. We wanted to see what studies have been done in this area and what they have found.

We searched all the available literature to look at the psychological impact of being diagnosed with HPV-related oral cancer. In essence, there wasn’t much research out there. Ten research papers had looked at the psychological impact of being diagnosed with an HPV-related oral cancer. Seven of these measured quality of life (a patient’s ability to enjoy normal life activities) and they had varying results. Some research studies found that patients with HPV-related oral cancer had better quality of life than those diagnosed due to tobacco or alcohol, or that there was no difference between the two groups of patients. In one study which interviewed survivors, some patients felt stigma or shame associated with their diagnosis, because of the sexually transmitted nature of HPV.

We also looked at what different groups of people know about HPV and oral cancer, which varied considerably. As you would expect, knowledge was higher among medical professionals than members of the public. Knowledge was also higher among students who were studying medicine or dentistry than students who were not studying these subjects.

So far, there haven’t been many studies looking at the psychosocial impact of a diagnosis of HPV-related oral cancer and many people in the general public do not know about the link between HPV and oral cancer. The research studies looking at the psychological impact of HPV-related oral cancer, looked at this in patients, but this has led to further research being conducted with health professionals, patients and their partners. This research has explored their experiences of diagnosing/being diagnosed with HPV-related oral cancer, as well as the psychological impact of a diagnosis of HPV-related oral cancer.

Article link:

Dodd RH, Waller J, Marlow LAV. Human Papillomavirus and Head and Neck Cancer: Psychosocial Impact in Patients and Knowledge of the Link – A Systematic Review. Clinical Oncology 2016. http://dx.doi.org/10.1016/j.clon.2016.02.012

Many people are now quite familiar with the idea that a common virus – HPV or human papillomavirus – is linked with cervical cancer. Girls in school Year 8 are offered a vaccine to protect against it, and women are sometimes tested for HPV in the context of cervical screening. But fewer people know that HPV is also linked with oral cancer. In 2013, Michael Douglas talked to the media about the link between HPV and oral cancer in the context of his own diagnosis, and we were interested to see if this was used as an opportunity to raise public awareness of the link.

We know that media coverage can influence public awareness and perceptions about cancer. People have been shown to be more interested in disease prevention following a celebrity diagnosis. In the UK, the case of reality TV star Jade Goody (who died of cervical cancer in 2009) was associated with an increase in the number of women attending cervical screening. The NHS Be Clear on Cancer media campaigns have also been shown to be effective in increasing awareness of key symptoms for cancers and with more people seeking help from their GP.

Michael Douglas was interviewed by The Guardian in June 2013, and stated that his throat cancer was ‘caused by HPV which actually comes about by cunnilingus’. This statement was later retracted by his publicist, but not before it had received global media attention. This provided the media with a prime opportunity to discuss the link between HPV and oral cancer. But just what was discussed?

In our research paper we looked at UK newspaper articles mentioning HPV and oral cancer and found that there had been some coverage of the link going back as far as 2001, but there was a large peak in articles following Michael Douglas’ disclosure in June 2013. When we looked at the content of these articles, we found they covered Michael Douglas’ disclosure, some questioned if oral sex is risky and others discussed the vaccination of boys and general information about HPV.

Taking their cue from Douglas’ statement, a large number of articles mentioned oral sex as a cause of mouth cancer, with some reflecting on why HPV-related oral cancer might be twice as common in men as in women. An increase in the number of people having oral sex was suggested as a reason for the growing numbers of HPV-related oral cancers. It was also acknowledged that ‘oral sex is a topic which could not have been discussed openly even recently’.

Although most of the articles included some information around HPV and oral cancer, this often wasn’t detailed. Some articles communicated that the incidence of oral cancer is increasing, but less than 20 per cent of the articles communicated the important messages that 8/10 people will contract HPV in their lifetime and that HPV-related oral cancer has a better prognosis and survival.

There were also calls for boys to be vaccinated against HPV, as oral cancer affects both men and women. Campaigners believe giving boys the vaccination will help stop the ‘catastrophic rise’ in cancers. Some also viewed it as unethical to give the vaccination to girls and not to boys.

The UK media did regularly discuss HPV and oral cancer and the transmission of HPV via oral sex, but detailed information about HPV was generally lacking. Important messages to remember and communicate to others are that HPV is common, it is a result of normal sexual behaviour, and it has a better prognosis than oral cancers caused by smoking and alcohol.

Article link:

Dodd RH, Marlow LAV, Forster AS, Waller J. Print and online newspaper coverage of the link between HPV and oral cancer in the UK: a mixed-methods study. BMJ Open. 2016; 6:e008740.

http://bmjopen.bmj.com/content/6/2/e008740.full?keytype=ref&ijkey=a1QD2l1zZXkM6GX

This blog was originally posted on the BioMed Central blogs network.

Cancer fear and fatalism may cost people their lives if it causes them to avoid cancer screening or seeing their doctor with symptoms.  A new study from the Health Behaviour Research Centre, published today in the British Journal of Cancer, shows that cancer fear and fatalism may be more prevalent among ethnic minority groups, which could help explain their lower engagement with early detection of cancer.

Earlier studies from the HBRC have looked at different aspects of cancer fear and how they affect willingness to attend cancer screening [1,2].  For example, in a study about colorectal cancer screening, we showed that worrying about cancer increased intention to be screened, but feeling uncomfortable at the thought of cancer made people less likely to attend screening [1].

In a different analysis of the same sample, we showed that those from an ethnic minority background were more likely to worry about cancer and feel uncomfortable thinking about cancer [3].  However, the number of people from an ethnic minority background in these studies was very small (4%), so we could not look at differences in cancer fear between different ethnic groups.

We have now extended these findings in a study which was published in the British Journal of Cancer today [4].  In this study, we compared levels of cancer fear and fatalism across 720 women from White British, Caribbean, African, Indian, Pakistani and Bangladeshi backgrounds, and examined where these differences may come from.  The study was part of a larger study on cervical cancer screening in women from ethnic minority backgrounds [5].

Our findings confirm that cancer fear is still very prevalent: about a quarter of all women feared cancer more than other diseases, or felt uncomfortable at the thought of it.  And about one in five women said they worried a lot about cancer.  There were few differences between the ethnicities, although Indian and African women seemed a bit more afraid of cancer (33%), and Bangladeshi women a little less (15%) on some indicators of fear.

Apart from cancer fear, we also looked at cancer fatalism, which was defined as a belief that cancer is predetermined and that it is incurable.  Here, some striking differences were found between the ethnic groups: almost a quarter of Caribbean women (23%), and more than half of Indian, Pakistani, and Bangladeshi women (50, 52, and 63%, respectively) believed that a diagnosis of cancer was down to fate, compared with only 6% of White British women.  In addition, a quarter to over a third (26-38%) of women from an ethnic minority background thought that cancer was incurable, but no White British women did.

We explored whether these fearful and fatalistic attitudes among women from ethnic minority backgrounds could be explained by level of acculturation and the belief that events in life are generally predetermined.  We found that not speaking English very well or having difficulty understanding health-related information was associated with being more likely to feel uncomfortable about cancer and believing that a diagnosis of cancer is predetermined.  However, these characteristics were also associated with being less likely to worry about cancer or fearing cancer more than other diseases.  Perhaps unsurprisingly, we also found that a belief that events in life are generally predetermined was associated with the belief that a diagnosis is predetermined, too.

Our study is one of the first studies to explore cancer fear and fatalism in different ethnic minority groups in the UK.  Our findings show that cancer worry is still pervasive in the UK, with no stark differences between ethnic groups, but fatalistic beliefs about cancer seem much more prevalent among those from an ethnic minority background.  These findings may help explain why women from ethnic minority backgrounds are less likely to attend cancer screening or to go to their doctor with symptoms [5].  Our findings also have implications for public health campaigns.  For example, those who do not speak English very well were more fatalistic and uncomfortable about cancer, suggesting that messages of increased survival may not reach these groups.

Further research should address the link between cancer fear and fatalism among different ethnic groups, and engagement with cancer early diagnosis directly, to help inform more targeted public health campaigns.

Charlotte discussed the findings of this study with DJ Nihal in his radio show on the BBC Asian Network on 7 March 2016, where it formed the starting point for an open discussion about cancer, fate, and stigma in the Asian community (from 1:12 onwards).

References

[1] Vrinten C, Waller J, von Wagner C, & Wardle J. (2015). Cancer fear: facilitator and deterrent to participation in colorectal cancer screening. Cancer Epidemiology Biomarkers & Prevention, 24(2), 400-405.

[2] Beeken RJ, Simon AE, von Wagner C, Whitaker KL, & Wardle J. (2011). Cancer fatalism: deterring early presentation and increasing social inequalities? Cancer Epidemiology Biomarkers & Prevention, 20(10), 2127-2131.

[3] Vrinten C, van Jaarsveld CH, Waller J, von Wagner C, & Wardle J. (2014). The structure and demographic correlates of cancer fear. BMC Cancer, 14, 597-605.

[4] Vrinten C, Wardle J, & Marlow LA. (2016). Cancer fear and fatalism among ethnic minority women in the United Kingdom. British Journal of Cancer. Advance online publication 11 February 2016; doi: 10.1038/bjc.2016.15

[5] Marlow LAV, Wardle J, & Waller J. (2015). Understanding cervical screening non-attendance among ethnic minority women in England. British Journal of Cancer, 113(5), 833-839.

In the fifth and final post in our series remembering Professor Jane Wardle and some of the contributions she has made to the field of behavioural science, Dr Becca Beeken writes about Jane’s work on the Ten Top Tips and habits.

Novel approaches to weight management

As part of Jane’s pioneering work on obesity, she developed novel, evidence-based methods for weight control. Jane recognised that there was a real need for weight loss advice for the general public that is easy to communicate, straightforward to follow, and applicable across a variety of lifestyles. She also acknowledged that while most weight management programmes talk about ‘habits’, they often just mean things we do all the time, and it’s usually in the context of breaking bad habits. Jane was one of the first behavioural scientists to explore whether we can teach people to form healthy habits, using habit formation theory.

According to psychological theory, habits are (relatively) automatically triggered actions that are formed through repetition in a consistent context, which makes them more and more automatic. Jane and one of her PhD students, Pippa Lally, asked people to pick a simple healthy behaviour, such as doing 50 sit ups, and then instructed them to repeat it in a consistent context (e.g. after their morning coffee). They showed that as time went on, individuals performed the behaviour more often, and they also reported that it felt more automatic- it was becoming a habit. Based on this study, Jane worked with the charities Cancer Research UK and Weight Concern to develop the Ten Top Tips.

The Ten Top Tips is a simple leaflet, which describes a set of ten simple energy balance behaviours that can be turned into habits. The leaflet explains the habit model and how to repeat the behaviours in a consistent context. Jane believed that this kind of intervention, which requires very little time to explain and is easy to understand, may be beneficial in primary care where time is short and effective advice for weight management is needed. Weight management advice that promotes permanent behaviour change is particularly important, because not only is losing weight very difficult, keeping the weight off is notoriously hard. Jane felt the Ten Top Tips could meet this need through helping people to make small changes that would become automatic over the longer term.

Jane led a large randomised controlled trial in obese adults in primary care (GP practices), across England, comparing weight loss in patients receiving the Ten Top Tips vs. ‘usual care’. This was the first time an intervention explicitly based on habit-formation theory had been delivered in the primary care context, and importantly the first evaluation of a simple weight loss advice leaflet. Jane and her team found that that the Ten Top Tips led to significantly more weight loss over 3 months than usual care, with 16% of patients achieving at least 5% weight loss; twice as many as in the usual care arm (8%). At 2 years over a quarter (27%) of patients who received the Ten Tops Tips had achieved at least 5% weight loss, suggesting patients maintained the changes made to their behaviours in the first few months after receiving the Ten Top Tips; they had become ‘habits’.

Jane’s work on the development and evaluation of the Ten Top Tips represents an important milestone for translational behavioural research. The Ten Top Tips could offer a low cost option for weight management in primary care and it has already been widely disseminated across the UK as part of Cancer Research UK’s Reduce the Risk campaign, which aims to raise the awareness of the avoidable risks of cancer. Her research group are continuing to take this important work forward, with new studies exploring the effectiveness of habit based advice for cancer survivors-‘Heathy Habits for Life’, and adapting the Ten Top Tips for families with overweight children-‘Tips for Tots’.