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Reviewing what we know: the psychological impact of HPV and oral cancer
By Rachael Dodd, on 21 March 2016
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
Making the headlines: HPV and oral cancer
By Rachael Dodd, on 7 March 2016
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
Ethnic minority women more fatalistic about cancer
By Charlotte Vrinten, on 2 March 2016
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.
Remembering Professor Jane Wardle – Part 5 – Ten Top Tips
By rmjdafo, on 24 January 2016
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’.
Remembering Professor Jane Wardle – Part 4 – Fear of cancer
By rmjdafo, on 17 January 2016
In the fourth post in our series on the contribution that Professor Jane Wardle made to the field of cancer behavioural science, Charlotte Vrinten and Sammy Quaife write about fear of cancer and how it affects cancer prevention.
Jane and cancer fear
As a cancer patient, Jane had first-hand experience of the emotional reactions that may follow a cancer diagnosis. In her article in the Guardian, she described the shock of learning of her diagnosis, which was followed by ‘every variation of denial’, sadness and depression, and fear of the ‘abyss that she had seen’. As someone who ‘had a foot in both camps’, she realised that this emotional reaction to cancer not only affects cancer patients, but also exerts its influence on the general population. Crucial to Jane’s work as a psychological researcher into the prevention of cancer, she understood that the fear of being diagnosed with cancer keeps many from engaging with cancer screening or early detection. Cancer is not generally a club you want to be a member of.
Her work showed that although much progress has been made in the treatment of cancer, it is still a widely feared disease. Her studies of population-based samples showed that 50-70% of adults are scared of cancer, and about a quarter worry a lot about cancer (McCaffery, Wardle, Waller, Prev Med, 2003; Vrinten et al, BMC Cancer, 2014). They also identified women and those who are younger, with less education, or from ethnic minority backgrounds as subgroups that are particularly afraid of cancer – a finding which may help explain differences in help-seeking for cancer symptoms or uptake of cancer screening.
As a Behavioural Scientist, Jane sought to understand how cancer fear may affect early detection behaviour, and this took centre-stage in her research on this topic. Her findings suggest that while a little fear or worry may motivate people to attend cancer screening, high levels may deter them; both from flexible sigmoidoscopy and FOBt screening. The addition of fatalistic beliefs to cancer fear seem to exacerbate this effect, leading to delays in seeking help for possible cancer symptoms, and avoidance of information about cancer, which may perpetuate these negative feelings and views. More recently, Jane extended this work to lung cancer, in an ongoing programme of work exploring the psychosocial deterrents to screening among smokers from socioeconomically deprived communities, and trialling a targeted invitation strategy which aims to minimise fear, fatalism and stigma.
One of Jane’s recent qualitative studies revealed that many people seem to be ‘in two minds’ about cancer; first expressing fear and thoughts of death, but then acknowledging (often in the same sentence) improvements in cancer treatment, survival and quality of life. Her population-based study supported this co-existence of positive and negative cancer beliefs, particularly among individuals with lower levels of education. Messages of improved outcomes and survival seem to be sinking in, but many people’s gut feeling about cancer remains one of dread.
Public campaigns tend to focus on increasing public fear about cancer – for example by emphasising how common cancer is or how deadly some types of cancer are. But Jane recognised that worrying about cancer can impair quality of life, and feeling afraid of cancer can cost a person their life if it puts them off going for screening or getting medical help for symptoms. Having faced the abyss herself, Jane was committed to helping people understand that there is a lot that they can do to lower their risk of cancer, that cancer outcomes are continually improving, and that there is no need for it to be the great dread it used to be.
Remembering Professor Jane Wardle – Part 3 – Psychological and behavioural implications of the link between HPV and cancer
By rmjdafo, on 10 January 2016
This third post in our series on the contribution that Professor Jane Wardle made to cancer behavioural science discusses the human papillomavirus (HPV or cervical cancer) vaccine and HPV testing written by Dr Alice Forster and Dr Jo Waller.
In 1976, Harald zur Hausen discovered that human papillomavirus (HPV) plays an essential causal role in the development of cervical cancer (he later won the Nobel prize in Physiology or Medicine in 2008 for this work). HPV can also cause cancers of the vagina, vulva, penis, anus and mouth and throat and is transmitted by skin to skin contact (usually sexual contact with cervical cancer). zur Hausen’s discovery made possible the development of technology to test for HPV, and this test is now used in the NHS cervical screening programme. Jane and colleagues realised that testing for a sexually transmitted infection in the cancer screening context might cause some women confusion and anxiety. They conducted work exploring the psychological impact of women testing positive for HPV, finding raised concerns about fidelity and blame and increased anxiety and distress. The work had implications for the kind of information women are given about HPV when they take part in screening.
Another implication of zur Hausen’s discovery was the development in the late 1990s and early 2000s of vaccines that protect against the two types of HPV that cause most cervical cancers. Jane recognised, based on her work on HPV testing, that vaccinating young girls against HPV, a sexually transmitted infection, could be controversial for some and sought to understand the potential acceptability of HPV vaccines.
One of Jane’s key studies in this area was conducted in 2005 before the HPV vaccine was licensed. The study aimed to explore mothers’ responses to information about the HPV vaccine. Jane and colleagues conducted a focus group study with 24 mothers of 8 to 14 year old daughters. The study found that most mothers were keen to prevent their daughters from developing cervical cancer, but they also had reservations about the safety and possible side-effects of the vaccine. Many mothers wanted to talk to their daughter about the vaccine and felt that this would be difficult if the vaccine was given to young children. Some felt that girls younger than 10 or 11 would not have had much, if any sex education and so discussing a sexually transmitted infection with them would be tricky. Others did not want to think about their daughter being sexually active and for this reason felt that they could not consider giving the vaccine to a 9 year old.
“They’re innocent at 9. They don’t do things like that.”
“It’s not thinkable is it, your 9-year-old doing anything like that?”
Parents also expressed fear that HPV vaccination might be seen by girls as consent to be sexually active or fear that girls would misinterpret HPV vaccination as protection against sexually transmitted infections in general. Earlier work conducted by Jane and colleagues suggested that around a quarter of mothers and girls themselves believed that girls would be more likely to have sex or unprotected sex following HPV vaccination. However, reassuringly, in the first longitudinal study to look at whether girls’ sexual behaviour changed following HPV vaccination, we were able to show that vaccinated girls were no more likely to have become sexually active after vaccination (compared to girls who did not get the vaccine), to have increased their number of sexual partners or to have changed how consistently they used condoms.
At the time of Jane’s initial research in this area, she and her team were one of only a handful of research groups internationally who were investigating the behavioural side of HPV vaccination and testing. Today, researchers across the world are applying behavioural science to understand how to maximise uptake of HPV vaccination in their own countries and to minimise the negative psychological consequences, and maximise the acceptability, of HPV testing. The work in our group continues, with projects aimed at understanding ethnic differences in uptake of HPV vaccination, exploring the psychological impact of primary HPV testing, and examining psychological responses to an HPV diagnosis in patients with head and neck cancer.
Jane’s work paved the way for the introduction of the HPV vaccine in the UK in 2008, by helping immunisation programme coordinators anticipate its acceptability among parents. Jane’s finding that the HPV vaccine might not be acceptable to mothers if it were offered to girls younger than 11 informed the UK government’s decision to recommend the vaccine for 12 and 13 year olds. Today, almost 90% of 12 and 13 year old girls in England get the HPV vaccine, and with it protection against HPV-related cancers.
Why some girls don’t get the HPV vaccine and why others don’t get all doses
By rmjdafo, on 6 January 2016
Girls in year 8 in the UK (aged 12 and 13) are offered a vaccine that protects against human papillomavirus or HPV. While HPV is very common, in some people it can cause cancers of the cervix, mouth and throat, vulva, vagina, penis and anus. The vaccine protecting against HPV was originally given in three doses when the immunisation programme first started, however it is now given in two doses over at least six months. Most girls in England get the HPV vaccine (around 87% of them), but as we’ve written before, uptake of the vaccine is lower among girls from Black and Asian Minority Ethnic backgrounds. We also know that more girls get the first dose of the vaccine than complete the series. This is concerning as the vaccine works best if girls get all doses. However, we do not yet properly understand why some girls are not getting the vaccine and why some girls do not complete the series. With this information we can identify targets for information campaigns or wider policy changes that can help establish and maintain high coverage.
In a study that was published at the end of last year, funded by Cancer Research UK, we spoke to girls who had been offered the HPV vaccine as part of the routine immunisation programme to find out why some girls had not got any doses of the HPV vaccine and why some had started, but not completed the series. The girls were recruited from 13 schools in London as part of a larger questionnaire study (some of the findings have been reported already here and here). Girls were asked if they had received the HPV vaccine and if they had, they were also asked how many doses they had received. We grouped girls as being unvaccinated (they had received no doses) or under-vaccinated (they had started the series, but had not finished it). They were then asked to explain why they were unvaccinated or under-vaccinated, and we categorised their responses using content analysis.
There were 259 girls who were either unvaccinated (202 girls) or under-vaccinated (57 girls) who also gave us a reason to explain why this was the case. These girls came from a diverse range of ethnic backgrounds; around 31% were from White backgrounds, 29% from Black backgrounds and 20% from Asian backgrounds (around 20% were from an ethnic background other than White, Black or Asian, which were mainly mixed backgrounds, and 2% did not tell us their ethnicity).
Reasons for being unvaccinated
The most common reason that girls gave to explain why they had not had the HPV vaccine was that they did not have consent from their parents (41% of girls said this).
“My mother didn’t want me to have it, even though I did” (Black Caribbean; self-reported ethnicity)
Other common reasons included concerns about safety (reported by 25% of girls) and believing that they did not need the vaccine (19% said this).
“My mum didn’t trust the vaccine because it was new” (Turkish).
“Because I’m not going to have sex before marriage” (Pakistani)
Reasons for being under-vaccinated
Administrative problems were the most common reason that girls gave to explain why they had not finished the vaccine series (51% gave this as a reason), including being absent from school on the day of vaccination and some did not know that multiple doses were needed.
“I never got round to having the 3rd one [dose] because I switched schools” (Indian).
Health reasons, including girls believing that they had conditions which meant they should not complete the series (9%) and procedural issues, including fear of needles (5%), were also reported.
“I hate needles” (Mixed White / Black Caribbean)
“After the first vaccine I started to feel lighted headed” (Mixed White / Black Caribbean)
Reasons given by girls from different ethnic backgrounds
Compared to girls from other ethnic backgrounds, girls from White backgrounds were most likely to say that they were concerned about safety. Girls from Black and Asian backgrounds were most likely to say that they did not think that they needed the vaccine.
Summary
In this study we tried to find out the reasons why girls from a diverse range of ethnic backgrounds have not had the HPV vaccine or have not completed the series. Among girls who had not had the vaccine at all, concerns about the safety of the vaccine and believing that they did not need the vaccine were commonly reported. Girls who had not finished series said that they were absent from school when the vaccine was offered, did not know that multiple doses were needed and felt they had health issues that meant they should not have all doses. There was some suggestion that girls from White backgrounds were most commonly concerned about vaccine safety and that girls from Asian and Black backgrounds were most likely to believe that they did not need the vaccine. These findings can be used to tailor interventions to increase informed participation in the HPV vaccination programme among girls who are currently unvaccinated or do not complete the series. This will be the next step in one of our current programmes of work funded by Cancer Research UK.
References
Forster, A.S., Waller, J., Bowyer, H., Marlow, L. Girls’ explanations for being unvaccinated or under vaccinated against human papillomavirus: a content analysis of survey response. BMC Public Health. 2015;15:1278. doi 10.1186/s12889-015-2657-6
Remembering Professor Jane Wardle – Part 2 – Bowel cancer screening
By rmjdafo, on 3 January 2016
In the second in our series on Professor Jane Wardle’s contribution to cancer behavioural science, Dr Christian von Wagner and Dr Sam Smith write about the impact that Jane’s work has had on bowel cancer screening.
Screening for bowel cancer prevention and early detection
Jane’s impact on the field of bowel cancer screening was immeasurable. Bowel Cancer Screening is unique in offering many different types of potential modalities to facilitate population based testing. All of them offer important public health benefits, but also present considerable challenges to their prospective users. Jane was at the forefront and a pioneer into much needed research on identifying determinants of uptake. One of her major legacies includes her extremely successful collaboration with Professor Wendy Atkin on the landmark trial of Flexible Sigmoidoscopy which paved the way to what is now known as the ‘Bowel Scope Screening Programme’. Implementation of this programme has the potential to reduce bowel cancer mortality by over 40%.
Another very important area of work emerging from this time was to document and better understand socioeconomic inequalities in screening uptake. Jane was one of the first to warn that with the benefits of new screening programmes (as with any other health innovation) comes the danger of widening already existing inequalities in health outcomes. She described this both for participation in the UK Flexible Sigmoidoscopy Trial and the completion of the home-based test kit used in the current Bowel Cancer Screening programme. Importantly, she went on to develop the first set of national interventions to reduce the social gradient in screening uptake using evidence based strategies.
This research has many components, including the largest trial of GP endorsement of a bowel cancer screening programme to date and the development of an enhanced reminder letter which successfully reduced socioeconomic inequalities in uptake. With this work Jane was able to inspire and lead a team of world renowned experts, many of whom had not previously worked together. As a result, there are now important publications on how to design very large public health trials into reducing socioeconomic inequalities and many excellent papers on the development and testing of evidence based and highly imaginative public health interventions that were cost free and easily implementable.
Going forward Jane will be sorely missed when trying to tackle future challenges in bowel screening. Her unique combination of pragmatism, ingenuity and her ability to rally both public and health professionals alike will be particularly missed when trying to implement the new Bowel Scope Screening Programme. Jane’s passion and enthusiasm for the topic is lost, but her colleagues and students, whom she so brilliantly mentored over her unequaled career, are determined to continue her legacy.
Remembering Professor Jane Wardle – Part 1 – Understanding the causes of obesity
By rmjdafo, on 20 December 2015
On 20th October, we lost the Director of our Health Behaviour Research Centre. Professor Jane Wardle, one of the UK’s leading health psychologists, was an extraordinary woman. She had an apparently insatiable appetite for research and new ideas, and the breadth of her expertise was simply awesome. She nurtured us, her PhD students and staff, to develop into independent researchers and supported us when we had personal difficulties. There was always laughter coming out of her office when she was in meetings and Jane’s door was always open to us. We miss her terribly.
While much has been written and said about her achievements and how extraordinary she was by Cancer Research UK, in the Guardian, Lancet, BMJ, The Times, The Psychologist and on Radio 4, we wanted to write about the science behind just a few of her contributions to behavioural science in cancer prevention. Over the next few weeks, our blog will do just that, starting with Jane’s work on understanding the causes of obesity written by Dr Clare Llewellyn and Dr Ali Fildes.
Our understanding of the causes of obesity
Professor Jane Wardle revolutionized our understanding of the genetic basis of human body weight. She was particularly interested in advancing our understanding of the causes of obesity because obesity is an important risk factor for cancer. In fact, obesity is the most important known avoidable cause of cancer after smoking.
We have known for many years that weight has a strong genetic basis. Importantly, Jane established that weight is as heritable now as it was 30 years ago, despite the recent large increases in obesity. This observation has been difficult for researchers to explain given the changes to the food and activity environments that are widely believed to have caused the rising rates of obesity. Researchers were confronted with the question, how can obesity be caused by both genes and the environment at the same time?
In order to answer this question, Professor Wardle developed the ‘Behavioural Susceptibility Theory’. She proposed that genes could be influencing weight through their effects on appetite. The key idea was that individuals who inherit a set of genes that make them more responsive to food cues (want to eat when they see, smell or taste delicious food), and less sensitive to satiety (take longer to feel full) are more susceptible to overeat in the current food environment, and become obese.
In order to test this theory Jane developed a parent-report measure of children’s appetite – the Child Eating Behaviour Questionnaire (CEBQ), and explored the genetic basis of appetite using 10-year-old twins from The Twins Early Development Study (TEDS). Researchers can compare how similar identical twins are, with how similar non-identical twins are, to estimate the importance of genes versus environment for any characteristic, such as appetite. Using the CEBQ she showed for the very first time that food responsiveness and satiety sensitivity both have a strong genetic basis. She also showed that the FTO gene (the first ‘obesity gene’ to be discovered in 2007), and other obesity genes, appear to be influencing weight through impacting satiety sensitivity.
After finding out that appetite is already highly heritable by age 10, Jane realized that she needed to go right back to the beginning of life to explore how genes are influencing appetite and weight from birth. She therefore established Gemini – the largest study of twins ever set up to study genetic and environmental influences on weight from birth. The Gemini study includes over 2400 British families with twins born in 2007, and has now been running for over 8 years. Under Jane’s leadership Gemini has become an internationally recognised study that has advanced our understanding of childhood growth. The success of the study can be measured in its numerous publications on a range of topics from appetite, to food preferences, sleep, physical activity and the home environment. Jane loved the Gemini study, and it shone through in every aspect of her work, from discussions about complex genetic analyses to the design of the annual newsletter sent to the many dedicated families who participate. In total, Gemini has trained (and continues to train) 7 PhD students, 5 postdoctoral researchers, and numerous MSc students. The Gemini team miss Jane terribly but are committed to continuing her incredible legacy.
Parents need more guidance to prevent overeating in ‘at-risk’ toddlers
By ucjthsy, on 17 December 2015
A new study from the HBRC investigating how appetite influences children’s eating patterns has been published in ‘The American Journal of Clinical Nutrition’. The article concludes that reducing toddlers’ portion sizes or number of eating occasions could potentially help to prevent weight gain in later life.
The research has found that how often and how much young children eat seems to be determined by two distinct appetitive traits: 1) ‘food responsiveness’ (the urge to eat in response to the sight, smell or taste of appetising food) and 2) ‘satiety responsiveness’ (sensitivity to internal ‘fullness’ signals). Children who are very responsive to food cues eat more frequently (i.e. more times per day), and children who are less sensitive to internal feelings of fullness consume more calories each time they eat. These eating behaviours may help explain why children who exhibit these appetitive traits are at higher risk of weight gain.
The study used data from 1102 families with twins (2203 children) born in 2007 from the Gemini twin study, a large national birth cohort which focuses on early childhood growth, appetite and the family environment. ‘Food responsiveness’ and ‘satiety responsiveness’ were assessed with the Child Eating Behaviour Questionnaire (CEBQ) when the children were 16 months old; and eating patterns were determined from 3-day diet diaries completed by parents when children were 21 months old. The average eating frequency was 5 times per day (ranging from 1 to 10) and the average amount eaten on each occasion was 180 calories (ranging from 59 to 417 calories per eating occasion).
Previous research has shown that children who are highly food responsive and/or have poor satiety responsiveness tend to be heavier and at greater risk of obesity, but it was not clear why exactly. We know from experimental settings that food responsive children or children with poor satiety responsiveness will eat more when presented with palatable foods such as cookies and crisps. However, this new study is the first to shed light on how children with these traits might overeat in everyday life, and consequently gain weight.
Currently there is little guidance for parents of young children about eating frequency and portion sizes. Parents are commonly told to feed according to their child’s own their appetite as it is generally believed that young children will regulate their own intake. However, this new research suggests some children are less able to regulate their own food intake than others. This means parents may need more tailored advice and information if their young child is at risk of overeating. In addition, assessing eating behaviour in early childhood could help to identify children potentially at risk of obesity later in life.
The research was funded by The Medical Research Council, Cancer Research UK and Nutricia Ltd and the results are published in ‘The American Journal of Clinical Nutrition’.
Syrad, H., Johnson, L., Wardle, J., & Llewellyn, C. H. (2015). Appetitive traits and food intake patterns in early life. The American Journal of Clinical Nutrition. Published Online:16 December 2015.