‘Health Chatter’: The Health Behaviour Research Centre Blog
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    “I’ve never heard of it”; “It doesn’t apply to me”- Two very different reasons why ethnic minority women are not getting screened for cervical cancer

    By Laura Marlow, on 22 July 2015

    Over the last 10 years several studies in the UK have suggested that women from ethnic minority backgrounds are less likely to attend for cervical screening, the question of why this might be remains. Our recent work published last week in the British Journal of Cancer attempts to shed some light on this.  We surveyed 720 women aged 30-60 years old from Indian, Pakistani, Bangladeshi, African, Caribbean and white British backgrounds, using quota sampling to ensure a large enough sample of women from each ethnic group were included. Compared to the white British women, women in each of the ethnic minority groups were between 5 and 13 times more likely to be a non-attender at screening, i.e. they had not been screened in the last 5 years. This is after adjusting for age, marital status and education level.

    Never heard of screening:
    Among the ethnic minority women 24% said they had never heard of cervical screening or they had never received an invitation. These women were more likely to have migrated to the UK as adults, not speak English well and have no formal qualifications. This finding is in line with our previous qualitative work which suggests a general lack of awareness about the cervical screening programme. It therefore seems important that we find ways to engage these women with the issue of cancer screening, and raise their awareness of the programme and their eligibility to take part. In England, all women aged 25-64 who are registered with a GP receive regular screening invitations, but our findings suggest that this information isn’t getting through to some groups.

    Been screened before, but not recently:
    We also identified a different group of non-attenders who had been screened in the past (more than 5 years ago), but had not been screened as recommended, despite receiving a letter reminding them to go. Overall 37% of ethnic minority women fell into this group. These women were more likely to be in the older age group (50-60 years) but other socio-economic factors (such as education level, migration status and language) didn’t predict who fell into this group. Exploring the reasons for being overdue cervical screening in older women is important as recent work suggests that not being screened between the ages of 50 and 64 years is associated with a greater risk of cervical cancer when women are over 65 years. There is also evidence that women over 65 years from both Asian and Black backgrounds have higher rates of cervical cancer. We looked at a range of attitudes to screening and found that women who had not attended as recommended were more likely to think that screening didn’t apply to them, either because they did not have any symptoms or because they were not sexually active. Some considered screening to be important, but had difficulty fitting it in around other commitments. This finding is consistent with our qualitative work where one Bangladeshi woman said; “It wasn’t that I didn’t want to do it, I felt that it wasn’t a great priority for me at that time, everything else was more important”. For these women interventions should be designed to ensure an understanding of the purpose of screening and the potential benefits for asymptomatic women and those who are not currently sexual activity.

    In this study and others, we are trying to gain a better understanding of why some people don’t take part in cancer screening. As this paper shows, people’s reasons can be very different, from not knowing anything about screening, to thinking it’s important but being too busy to go. By understanding more about these different reasons, we can help to ensure that everyone makes an informed choice about screening, and is able to take part if they want to. We hope this work will help to reduce inequalities in screening participation and make sure that everyone is properly informed about the purpose of screening.

    ‘I’m either going through the menopause, or I’ve got cervical cancer’ – how do women make sense of bodily changes that could (but probably don’t) signal cancer?

    By Jo Waller, on 7 July 2015

    The recent cervical screening awareness week was a great opportunity to share information about cervical screening.  Screening (the ‘smear test’) aims to pick up and treat abnormal cells in the cervix before they become cancer.  But for most gynaecological cancers, there isn’t a screening programme, so noticing symptoms and getting them checked is the key to making sure cancer can be diagnosed at an early stage when treatment is most effective.

    Our newly published research paper tried to understand how women notice and make sense of symptoms that might indicate a gynae cancer.  There are five of these cancers, affecting the cervix, womb, ovary, vagina and vulva.  They have a range of symptoms, many of which are common and are caused by much less serious conditions – things like bloating, bleeding between periods or after sex, and changes in bowel habits.  We interviewed 26 women who’d had these kinds of symptoms to find out what they thought had caused them, and what they’d done about them.  Generally, and understandably, most women assumed that the symptoms were caused by everyday things like diet, the contraceptive pill, menopause or pre-existing conditions like fibroids.  We didn’t mention cancer in the interviews, and nor did most of the women taking part.  One participant whose periods had become longer than usual said: ‘I have a contraceptive implant which can cause irregular bleeding … It never caused me any trouble and suddenly all this. So that could be one of the reasons.

    Most women in our study tried to manage the symptoms themselves, or talked to friends or family about them, rather than going to the doctor.  They only tended to see their GP if the symptoms got worse or became persistent.

    Our study highlights the essential conundrum of cancer symptoms, which is that the symptoms that indicate cancer are often quite common, and in most cases will be have a much less serious explanation.  But if we ignore them completely, or until they become debilitating, we risk diagnosing cancer at a later stage when treatment might be more aggressive and less effective.  The difficult thing is finding the balance between rushing to the doctor for every twinge, and leaving it too late when something is really wrong.

    Cancer Research UK have developed guidelines to help people decide when it’s appropriate to go to the doctor and get a symptom checked out.  For example, with bloating, they suggest you make an appointment if you’ve been bloated on most days for at least 3 weeks.  This should be useful for people worrying about whether their symptom is serious enough to warrant ‘bothering’ their GP, which is sometimes a barrier to making an appointment.

    Picture

     

    Our research group is continuing to do work to try to understand how people make sense of symptoms, and the processes through which they decide if and when to seek help.  If you do work in this area, you might be interested in this funding call for early diagnosis research.  And if you have comments on our study, we’d love to hear them.

    Learning to like vegetables: Starting early

    By Alison M Fildes, on 10 June 2015

    Vegetables are commonly among children’s least liked foods, while sweet-tastes are preferred from the outset. These preferences are reflected in children’s diets with children in the UK and other European countries eating too few vegetables and too many sugary foods. Evidence suggests introducing vegetables early in life may have important implications for future health. It is possible to learn to like foods, such as vegetables, simply by trying them on multiple occasions. Older children (or adults) may need to try a food 14 times or more before they begin to like it but infants are particularly accepting of new tastes. This makes the weaning stage is a key period for learning to like a variety of different foods.

    As part of the European HabEat project we conducted an exploratory trial investigating the impact of advising parents to introduce of a variety of single vegetables at the very start of weaning. Pregnant women or mothers with infants less than 6 months old were recruited from healthcare settings in the UK, Greece and Portugal. Mothers and their infants were randomized (allocated by chance) to either an intervention group or a control group, ensuring there were equal numbers of breast-fed and formula-fed infants in each group. Intervention mothers were visited before they started weaning and were given advice on introducing five vegetables (one per day) as their baby’s first foods, repeated over 15 days. After the first 15 days, intervention mothers were told to continue to offer vegetables but also to start introducing other age-appropriate foods such as fruit. Mothers in the control group received standard care, which varied from country to country. For example, UK recommendations are to introduce fruits, vegetables and baby rice or cereal as first foods, but the information provided to mothers is inconsistent and access to advice may vary by region.

    Taste tests were conducted one month after the start of weaning. Intervention and control infants were fed unfamiliar vegetable (artichoke) and fruit (peach) purées and a researcher recorded how much of it they ate (g) and how much they appeared to enjoy these foods. When the results for the UK, Greece and Portugal were combined (n=139) the children who took part in the intervention, and ate a variety of vegetables for the first 15 days of weaning, had not eaten significantly more of the unfamiliar vegetable purée than the children from the control group. However in the UK, intervention children ate almost twice as much of the unfamiliar vegetable compared with control children whose parents were not advised to offer vegetables as first foods (32.8g vs. 16.5g). UK mothers and researchers also rated intervention infants’ as liking the vegetable more. Whereas in Portugal and Greece there was no significant effect of the intervention on infants’ intake of or liking for the vegetable. In all three countries, there was no difference between groups in the amount of fruit purée children ate or how much they seemed to like it.

    These results may be partly explained by variation in existing weaning practices across Europe. Common first foods given to UK infants include fruits and ‘baby rice’. Vegetables, particularly green or bitter tasting varieties, are offered less frequently. When they are introduced vegetable purées are often combined with fruits such as apple or pear, sweetening the food and potentially masking the vegetable flavour. In contrast vegetables are regularly offered as first foods in Portugal where vegetable soups are a common weaning food. These differences may be reflected in later dietary patterns as Portuguese school-children have some of the highest levels of vegetable intake in Europe.

    The findings of this study suggest that repeatedly offering a variety of vegetables to infants at the start of weaning may work to increase vegetable acceptance in countries where vegetables are not already given as first foods. However, we don’t know yet whether this effect will last throughout toddlerhood and into later childhood, so this will need to be explored in future studies.

    Reference: Fildes A., Lopes C., Moreira P., Moschonis G., Oliveira A., Mavrogianni C., Manios Y., Beeken R., Wardle J. & Cooke L. (2015). An exploratory trial of parental advice for increasing vegetable acceptance in infancy. British Journal of Nutrition. journals.cambridge.org/bjn/vegetabletrial

    Why Tomorrow Never Comes

    By Siu Hing Lo, on 1 June 2015

    People often have good intentions, especially in relation to their health. Bowel cancer screening is no exception. In a recent population-representative survey we conducted, 70% of survey respondents eligible for screening said they would definitely take part, as opposed to 8% who would definitely not take part.

    However, we also know that a substantial proportion of people who have positive intentions do not translate these into actions. In our most recently published study, we looked at what people do rather than what they think to shed light on this phenomenon.

    We asked people to imagine what they would do if they were at home and had just opened an envelope with the bowel cancer screening test kit. This stool test can be self-completed at home and is sent to all men and women aged 60-74 in England. We also reminded them that they would normally not be able to complete the test immediately. So the question was: what would you do in between receiving the test kit and (not) completing it?

    Unsurprisingly perhaps, respondents who said that they ‘would decide after some thought’, ‘put the kit aside to deal with later’ or ‘put it on the “to do pile”’ were less likely to have taken part in screening. Inversely, those who said they would ‘read the instruction leaflet’, ‘put the kit near the toilet’ or ‘decide when to do the test’ were more likely to have participated.

    Most interestingly, however, the relationship between these ‘micro actions’ and past screening participation were not explained by people’s intention to screen. These results suggest that our survey had successfully tapped into factors influencing screening participation other than people’s screening intention and beliefs about screening.

    Our recent study adds more evidence to the hypothesis that actions speak louder than words. It also suggests it is time to re-think how we survey people. Do we ask them what they think or what they do? Perhaps both are important in their own ways, but a shift in emphasis from the former to the latter might be warranted.

    References

    Lo, S.H., Waller, J., Vrinten, C. & C. von Wagner (2015), ‘Micro actions in colorectal cancer screening participation: a population-based survey study’, BMC Cancer, 15:438, doi: 10.1186/s12885-015-1465-9

    Exploring Twitter for Health Research

    By Siu Hing Lo, on 22 May 2015

    Twitter is probably one of the most obvious resources available for gauging public sentiment. It offers a rich, large-scale data source that can give insight into what people are thinking without having to interview or survey them. However, the use of Twitter data for research is relatively unexplored terrain.  So before conceiving of any “serious” research studies, my colleague Alex Ghanouni and I decided to explore Twitter as a data resource. In this piece, I would like to share our thoughts about our first informal attempt at venturing into the ‘Twittersphere’.

    The starting point of our adventure was a curiosity about what is being said about cancer treatment and cancer prevention in social media. We adapted publically available Python code to track keywords in real time. The first iteration was for one hour only (12th March 2015); the subsequent two iterations were for 24 hours each (24th March; 5th May).

    One seemingly easy question to address was the volume of tweets about “cancer treatment” and “cancer prevention” in relation to each other and “cancer” in general. We naively assumed that a count of tweets would be able to address our question. However, after the second iteration, it became apparent how naive our initial searches had been: Many of the tweets found using the keyword “cancer” turned out to be referring to the zodiac sign. As we could not think of a select group of second keywords that would be (almost) guaranteed to be used in conjunction with “cancer” the disease, we gave up on tracking “cancer” alone.

    We had more luck with “cancer treatment”, “cancer prevention” and their relatively unambiguous synonyms and permutations. The volume of tweets for “cancer treatment” (24th March: 8355; 5th May: 5558) was consistently larger than that for “cancer prevention” (24th March: 5156; 5th May: 1487). This was even true around the 24th of March, the day when the news broke about Angelina Jolie’s preventative surgical removal of her ovaries and fallopian tubes. Although these findings do not reveal what is said about these topics, it should nevertheless give an indication of how much interest they generate. When it comes to cancer, it appears the public discourse mainly revolves around treatment rather than prevention. This is also in line with what we expected based on our professional and personal experience. Although our present investigation could not have been more rudimentary, more serious attempts at tracking specific keywords over longer periods of time might lead to genuinely novel insights.

    Of course, we were also at least as interested in the content of the tweets about “cancer treatment” versus “cancer prevention”. To avoid a time-consuming traditional content analysis, we used the free web-based tool, ‘Wordle’, to create word clouds which reflect the frequency of words in text. Before creating the word clouds, we first removed all search terms from the tweet texts. When we examined the word clouds it became clear that there were two reasons why words were frequently used. Firstly, the words could be related to “real” news, which was the case for cancer prevention on the 24th March from 12pm GMT:

    Cancer&Prevention_24.03.2015b

    However, in two of the four word clouds we inspected, the most prominent words related to an obscure news source tweeting about dubious cancer cures (most likely for commercial reasons) or out-of-date research findings (a cervical screening paper from 1979).  Finally, it was hard to interpret the results of the fourth word cloud, as there were few words that really stood out.  A few of the largest words originated from a poem line (“That smile could end wars, and cure cancer”).

    cancertreatment_05.05.2015_clean

    As an academically-trained researcher, I felt compelled to do a quick – albeit not too rigorous – literature search for peer-reviewed publications as well. Both the PubMed and PsycINFO databases yielded around 750 hits containing the keyword “Twitter”. Compared with other one-word search terms, this is a modest number.  One review of published health studies using Twitter data concluded that most researchers lacked the knowledge and skills to process the large volumes of data and limited their samples in accordance with their ability to process and analyse the data (Finfgeld-Connett, 2014).  A second limitation they noted was the population-representativeness of Twitter users, or rather, the lack thereof.  Broadly speaking, we concurred with this review’s conclusions, although we would like to add a few nuances and additional observations.

    Let’s start with looking at us, the researchers first.  Our first research experience with Twitter was in line with the challenges of using Big Data for health research that I discussed in a previous blog post.  Most of us who are interested in the content of social media tend to have a social science background.  Programming and data mining are therefore not part of our skillset acquired through formal education.  This obviously constrains what we can do with large volumes of data without help from those who are conventionally employed to work with Big Data.  Having said that, we felt that the lack of a reliable alternative to human judgement limited us more than our technical skills.  We repeatedly needed to resort to more simple forms of analysis (i.e. reading the tweets…) to determine what the data were actually telling us and there seemed to be no obvious way we could have outsourced this task to an algorithm.

    Similarly, although there are probably sophisticated programmes to weed out bot-generated tweets, authenticity of the tweets might be a more general problem which cannot be easily addressed without human intervention.  The most obvious challenge is that tweets originate from a variety of users who have diverse professional, commercial and personal motives.  This is compounded by Fifgeld-Connett’s observation regarding the representativeness of Twitter users.

    These challenges may not be insurmountable, but they do highlight that Twitter data is far from “clean” and straightforward to interpret for health research purposes.  I for one will be keeping a keen eye on future research endeavours tackling these issues.

     

    References

    Finfgeld-Connett, D. (2014), ‘Twitter and Health Science Research’, Western Journal of Nursing Research, 1-15.

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

    By Lauren Rockliffe, on 18 March 2015

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

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

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

    What is HPV and why is the vaccination important?

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

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

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

    What does the EMPATHIC study involve?

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

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

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

    What will happen after the interviews?

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

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

    Get in touch!

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

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

    The dark side and the bright side of cancer

    By Susanne Meisel, on 4 March 2015

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

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

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

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

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

     

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

    http://journals.lww.com/eurjcancerprev/Abstract/publishahea/Socioeconomic_inequalities_in_attitudes_towards.99519.aspx

     

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

    By Susanne Meisel, on 3 March 2015

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

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

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

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

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

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

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

     

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

    The lowdown on lung cancer stigma

    By Laura Marlow, on 17 February 2015

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

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

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

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

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

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

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

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

    By Susanne Meisel, on 16 February 2015

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

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

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

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

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

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

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

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

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

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

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