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.

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.

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

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.

On 20^th 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.

Today, research investigating ways to increase the number of people taking part in the national bowel cancer screening programme in England is published in The Lancet.  This research was conducted by UCL, along with their collaborators at Imperial College London, Queen Mary University of London and each of the NHS Bowel Cancer Screening Hubs across England.

Bowel cancer (also known as colorectal cancer) remains one of the most commonly diagnosed cancers in the UK and is the second biggest cause of cancer deaths. The NHS in England manages a bowel cancer-screening programme which aims to find bowel cancer at an early stage when it can be treated more successfully. The screening programme invites men and women to complete a home-based test called a FOB (faecal occult blood) test every two years from age 60 to 74.

However, only about 1 in 2 people actually take part in the screening programme and data shows that the number of people doing the test is much lower (35%) among people who live in some of the poorest areas in England compared to those living in the richest areas where uptake is about 60% (von Wagner et al, 2011).

As everyone can benefit from having bowel cancer found early out team of researchers developed four separate interventions to try and reduce the difference in uptake between people in poor and rich areas. Each intervention was tested in a randomised controlled trial built into the Bowel Cancer Screening Programme and involved 747,856 people across the whole of England.

The interventions consisted of simple changes or additions to the material people already receive from the Bowel Cancer Screening Programme when they are first invited to take part:

1. Gist leaflet: An additional ‘gist’ leaflet was added to the usual information material sent out to invitees. This leaflet summarised the key points about bowel cancer screening using simple language and in an ordered format to help guide the reader through all the information needed to make a screening decision. The front page included bullet points of facts considered essential to making a screening decision e.g. how common bowel cancer is. The reader was then encouraged to turn the page for more information about the screening test e.g. how the test works and what happens after completing the test. For those wanting further, more detailed information, they were instructed to read the usual ‘Facts booklet’ sent with the leaflet (Smith et al, 2013; Smith et al, 2013, Smith et al, 2015).
2. Narrative leaflet: An additional ‘narrative’ leaflet was added to the usual information material sent out to invitees. This leaflet provided stories and quotes from people who had previously taken part in bowel cancer screening, selected to address known barriers (e.g. disgust at having to handle poo samples) and motivators (e.g. having peace of mind from a negative test result) to screening. Photos of those who provided their stories of screening were included to legitimise the quotes and help the reader connect with others who have overcome barriers and completed the screening test (McGregor et al, 2015).
3. General Practitioner (GP) Endorsement: The usual invitation letter included a section at the top highlighting that the individual’s GP practice supported bowel cancer screening. Wendy Atkin and her team at Imperial College London contacted all GP practices in England to ask them to help with this study and 80% agreed to have their support stated on the letters.
4. Enhanced Reminder: The usual reminder letter included a section at the top highlighting the statement ‘A reminder to you’ to try and get people’s attention. Towards the end of the letter a section was added to highlight key points to remember when thinking about whether to take part in screening or not: a) that a person’s risk of getting bowel cancer increases as they get older, b) that finding bowel cancer early can make successful treatment more likely, and c) that it is not too late to do the test.

The results found that the GP Endorsement and the Enhanced Reminder increased overall uptake of bowel cancer screening, but the effect was very small. Importantly, only the Enhanced Reminder managed to narrow the gap between those living in rich and poor areas.

Unfortunately, despite being found to increase knowledge about bowel cancer and screening (Gist leaflet), and intentions to have screening (Narrative leaflet) in earlier, smaller studies, both leaflets failed to make a positive impact on the number of people who actually take part in bowel cancer screening.

These results show just how difficult it is to change health related behaviours and the continuing challenge faced by public health researchers. It would appear that more profound changes to the current bowel cancer screening programme are needed to substantially reduce the gap between people living in rich and poor areas.

In the meantime, even a small increase in uptake can have a huge impact on the national burden of bowel cancer. The GP Endorsement and the Enhanced Reminder are simple, low-cost interventions that could easily and quickly be integrated into the current programme and, therefore, should perhaps be considered for adoption by the NHS.

This research was funded by the National Institute for Health Research and the results are now published in The Lancet.

Wardle, von Wagner et al (2015). Effects of evidence-based strategies to reduce the socioeconomic gradient of uptake in the English NHS Bowel Cancer Screening Programme (ASCEND): four cluster-randomised controlled trials. The Lancet, Published Online:08 December 2015.

By Siu Hing Lo

Health behaviour research often relies on surveys to collect data of people’s lifestyle and views about health. However, there is concern about the reliability of self-report measures. Common reasons for inaccurate self-report include the desire to give socially desirable answers and issues with recall. When people report their participation in cancer screening their answers are likely to be affected by both. Surveys consistently show that most people agree that screening is a good idea, so it is reasonable to assume they might be tempted to give a socially desirable answer when asked about their own behaviour.

Previous evidence from the United States suggests that social desirability is not the (main) explanation (Vernon et al., 2012). Nevertheless, recall could still be a significant issue. The most common screening tests used in the UK require participation at two- to five-yearly intervals. This means that accurate self-report requires people to recall what they have done over a long period of time. In our latest survey study, we asked respondents permission to check their NHS screening records, so we could compare their self-reported participation in bowel cancer screening with their NHS records.

Unfortunately only around 40% of the total survey sample agreed to this ‘record check’. People who agreed were also more likely to be more affluent and have participated in bowel cancer screening.
On the positive side, we showed that those who consented to the record check could accurately report whether they have ever take part in bowel cancer screening. A large majority also accurately reported whether they had taken part at least twice (81%) and whether they had taken part every time they had been invited (77%).

Interestingly, mismatches between self-report and records were due to both ‘over-reporting’ and ‘under-reporting’ of screening participation. On the one hand, one-fifth of respondents who said they had taken part every time, had in fact failed to respond to at least one invitation. On the other hand, roughly one-sixth reported having taken part once, even though – in reality – they had taken part at least twice.
Although we could only examine the accuracy of self-reported bowel cancer screening among survey respondents who gave permission for the record check, it allowed us to explore what type of biases are likely to result from different survey questions. The biggest obstacle to accurate self-report of bowel cancer screening seemed to be recall of the number of screening tests received and completed. Survey measures which rely less on recall of each screening episode are therefore more likely to yield reliable data.

References

Lo, S.H., Waller, J., Vrinten, C., Wardle, J. & C. von Wagner (2015), ‘Self-reported and objectively recorded colorectal cancer screening participation’, Journal of Medical Screening, in press.

Vernon S.W., Abotchie P.N., McQueen A., et al. (2012), ‘Is the Accuracy of Self-Reported Colorectal Cancer Screening Associated with Social Desirability?’, Cancer Epidemiology Biomarkers and Prevention, 21, 61-5.

Have you ever searched for information about cancer? Chances are, if you have, it was a Google search that led to a website like WebMD, the Mayo Clinic, or a charity such as the American Cancer Society or Cancer Research UK. Research on cancer information seeking behaviour of the public tells us that most people first turn to the Internet, with more in-depth searching possibly extending to talks with friends, family, and health professionals. But who searches for cancer information? We already know that people in America who actively seek out information about cancer are most often well educated, have a high income, are under age 65, are white, and have a usual source of health care (1).

Currently, the global rise in cancer incidence has coincided with the technological revolution that sees internet and mobile usage increasing across the globe (2). As a result, searches for cancer information have increased among the public, but these increases are occurring disproportionately among people with higher levels of education and income (3). This trend indicates that social inequalities in health communications are widening, and will continue to do so. The outcome would be that people who are the best educated and most economically advantaged would have the best opportunities for access to, and use of, information about cancer to help them make informed decisions about prevention and early diagnosis.

To learn more about this issue, we conducted a study investigating the relationships between literacy, cancer fatalism, and active seeking of cancer information (4). Cancer fatalism can be described as deterministic thoughts about the external causes of the disease, the inability to prevent it, and the inevitability of death at diagnosis (5). We wondered whether low literacy and cancer fatalism pose barriers to seeking cancer information, and in particular whether low literacy might lead to fatalistic beliefs about cancer, which might then in turn stop people from seeking out cancer information.

Our logic model of the relationships between low health literacy, cancer fatalism, and cancer information seeking

We used data from the publicly available U.S. Health Information National Trends Survey (HINTS). The HINTS is a great resource for anyone who interested in trends in the use of cancer-related information among the general American public. The survey is nationally representative of American adults aged 18 years and over. We used data from the third cycle of the fourth round of HINTS, which was conducted in 2013. We used data from 2,657 American adults who had no cancer history. The measures of interest were:

Health literacy

• Reading comprehension of a nutrition label, scored out of 4 points

Cancer fatalism

• Agreement/disagreement with each of three statements:
• “It seems like everything causes cancer”
• “There’s not much you can do to lower your chances of getting cancer”
• “When I think about cancer, I automatically think about death”

Cancer information seeking

• Asked respondents whether they had ever searched for cancer information

The results shown below are representative of the American public aged 18 years and over.

What did we find?

One-third (34%) of American adults had low literacy, according to our measure. This is a substantial proportion of the population, given that the measure assessed basic reading comprehension of a nutrition label, which is important for health.

Most American adults (66%) agreed that, “it seems like everything causes cancer”. However, most disagreed (71%) with “there’s not much you can do to lower your chances of getting cancer”. Responses were more evenly balanced to, “when I think about cancer, I automatically think of death”, with 58% agreeing.

Just over half (53%) of the American public had ever searched for information about cancer. Independently of sociodemographic factors, adults with low literacy were less likely to search for information than those with high literacy. People who agreed that, “there’s not much you can do to lower your chances of getting cancer” were also less likely to search for cancer information. The other two fatalistic beliefs were not associated with cancer information seeking, but people with low income and low education were less likely to actively seek out cancer information.

Finally, we found that while literacy had a strong direct effect on cancer information seeking, the fatalistic belief, “there’s not much you can do to lower your chances of getting cancer” explained about 14% of the effect of literacy on cancer information seeking. This means that people with low literacy are slightly more likely to hold this fatalistic belief, which in turns acts as a barrier to seeking out information.

What does it mean?

This study indicates that addressing health literacy and fatalism about cancer prevention should be a priority for future cancer communication strategies. Population groups with less access to health care, who are the most vulnerable to low literacy and fatalistic beliefs about cancer, are also the least likely to benefit from cancer information. We feel that strategies to improve public beliefs and knowledge about cancer might be best placed outside of the clinical environment. For example, advertising strategies and public events in opportunistic settings such as road shows might help to increase incidental exposure to cancer information among those people who are least likely to actively seek it (6-8). Communication strategies such as patient narratives, such as those found on the Prevent Cancer Foundation website, also show promise. Overall, fatalism and health literacy may represent useful targets for cancer control strategies aiming to increase all people’s abilities to manage their risk of cancer, and to reduce social inequalities across the continuum of cancer control.

The full paper is available at Health Education and Behavior.

References

1. Finney Rutten LJ, Squiers L, Hesse B. Cancer-Related Information Seeking: Hints from the 2003 Health Information National Trends Survey (HINTS). J Health Commun 2006;11:147-156. doi: 10.1080/10810730600637574
2. Viswanath K. The communications revolution and cancer control. Nat Rev Cancer 2015;5:828-835. doi:10.1038/nrc1718
3. Finney Rutten LJ, Agunwamba AA, Wilson P, Chawla N, Vieux S, Blanch-Hartigan D, et al. Cancer-related information seeking among cancer survivors: Trends over a decade (2003-2013). J Cancer Educ 2015 [Epub ahead of print]. doi:10.1007/s13187-015-0802-7
4. Kobayashi LC, Smith SG. Cancer fatalism, literacy, and cancer information seeking in the American public. Health Educ Behav 2015 [Epub ahead of print]. doi: 10.1177/1090198115604616
5. Niederdeppe J, Levy AG. Fatalistic beliefs about cancer prevention and three prevention behaviors. Cancer Epidemiol Biomarkers Prev 2007;16:998-1003.
6. Ironmonger L, Ohuma E, Ormiston-Smith N, Gildea C, Thomson CS, Peake MD. An evaluation of the impact of large-scale interventions to raise public awareness of a lung cancer symptom. Br J Cancer 2015;112:207- 216. doi:10.1038/bjc.2014.596
7. Power E, Wardle J. Change in public awareness of symptoms and perceived barriers to seeing a doctor following Be Clear on Cancer campaigns in England. Br J Cancer 2015;112:S22-S26. doi:10.1038/bjc.2015.32
8. Smith SG, Rendell H, George H, Power E. Improving cancer control through a community-based cancer awareness initiative. Prev Med 2014;60:121-123. doi:10.1016/j.ypmed.2013.11.002

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

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

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

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

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

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

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

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

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

References

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

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

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

By Monica Koo and Yoryos Lyratzopoulos

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

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

• The median diagnostic interval (the time between when a patient first presents with symptoms and diagnosis) was around 180 days (almost 6 months). This means that more than half of the patients in this study had a diagnostic interval of longer than 6 months, which is a pretty alarming finding. Similar findings have been published in England recently, showing how difficult it can be to detect and diagnose lung cancer.

• Older patients had longer median diagnostic intervals than younger patients, and women had longer diagnostic intervals than men. Again, similar patterns have been described before in the UK, but the inequalities found by this study were particularly large and clearly further research is needed in this area.

• There were also delays from diagnosis to treatment, which were much shorter than the diagnostic interval (27 and 18 days for patients with non-small cell and small cell lung cancer respectively). Patient characteristics didn’t have much effect on the length of the treatment interval, compared to the diagnostic interval. In other words, once a diagnosis of lung cancer was made, the patient’s age, sex, race, and comorbidity status (whether they had other health conditions) didn’t influence their time to treatment much.

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

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

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