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How should we talk about cancer?

By rmjlmko, on 2 September 2015

By Claire Friedemann Smith, Charlotte Vrinten, and Monica Koo

Words are powerful. One area where this is undeniably true is in our communication around health and illness: the words we use have the power to comfort and support, or isolate and dishearten. The tricky thing is, one person’s call to arms could be another’s final straw. This makes it very important to think about how we as researchers, and the wider medical community, talk about illness, particularly illnesses that are very emotionally charged such as cancer. Last week, the cancer screening and early diagnosis group at the HBRC discussed a presentation on this subject given by Professor Elena Semino about the use of metaphors in communication around cancer, recorded at Cancer Research UK earlier this year.

Professor Semino presented the results of a large mixed methods study she had led into the use of metaphors by patients and healthcare professionals when talking about cancer. The team used both qualitative and quantitative methods to analyse two datasets based on online material by patients and healthcare professionals. The researchers found that the metaphors used by patients and healthcare professionals broadly fell into two categories: ‘violence’ and ‘journey’ metaphors. Violence metaphors were used to describe cancer as an enemy to be fought, using drugs and medical research as weapons, with the aim of conquering the disease and winning the battle by surviving the cancer. Journey metaphors, on the other hand, describe cancer as a road to travel, with an uncertain destination.

The use of metaphors is probably familiar to any of us who have seen adverts raising money for cancer research or have had personal experience of talking about cancer. This study found that using these metaphors could have both positive and negative consequences for patients. For some patients, the thought of fighting a battle to defeat cancer galvanised and motivated them in their attitude towards cancer treatment, and patients often encouraged each other and described success in treatment using violence metaphors. But others felt disempowered by this metaphor: they felt that it was the disease conquering them rather than the other way around. Professor Semino highlighted how violence metaphors may be particularly inappropriate for terminal cancer patients for whom thinking of cancer as a “losing battle” could be demoralising and could lead to feelings of being blamed and stigmatised by others for “not fighting hard enough”.

So were journey metaphors the better option? The researchers found that journey metaphors were similarly used in both positive and negative ways. Some patients used journey metaphors to express a sense of purpose and companionship: those with new diagnoses were being led by others who had started their journey before them and understood what they were going through because they had travelled the same road. Other patients used the journey metaphor to express their disempowerment and lack of control as they were travelling against their will, on a journey they could not control, and along a road they did ‘not even wish to be on’.

There are many other metaphors that may be used to describe cancer: for example, BBC producer Andrew Graystone described his cancer as “an unwelcome lodger”. Others have described cancer as a “scary fairground ride” where you just have to hang on until you can get off. Professor Semino concluded that when discussing cancer with patients, we should adopt a particular metaphor depending on the individual patients’ preferences, and in mass communications we should use metaphors that work positively for most people and do not harm others.

With this in mind, Professor Semino and her colleagues are developing a “metaphor menu” for cancer patients to provide alternatives to the common battle and journey metaphors. This led to a lot of interesting discussion here at the HBRC around how this would be presented to patients. When would it be appropriate to offer it? How effective would it be when violence and journey metaphors continue to dominate cancer discussions in the mass media? Although we did not come up with any definite answers to these questions, we are very much looking forward to seeing how the metaphor menu will be taken forward.

It is also interesting to consider the implications of violence metaphors for public health. Recent work by Hauser and Schwarz suggests that violence metaphors may make people less likely to engage in some cancer prevention behaviours, such as stopping smoking or limiting alcohol intake. But just like Professor Semino’s research showed, not all violence metaphors are bad. A study on flu vaccinations found that violence metaphors actually increased people’s willingness to get a flu jab. The question then becomes: when is it appropriate to use violence metaphors in public health communications?

Although more research on the topic is needed, Hauser and Schwarz suggest that violence metaphors encourage an aggressive attitude towards an enemy and promote an active attack on this enemy. So violence metaphors may be helpful when we need to actively do something to protect against cancer (for example, exercising or eating more fruit and veg), but may not be so helpful when we need to limit ourselves to reduce the risk of cancer, as with stopping smoking, reducing alcohol intake, or losing weight. Violence metaphors may be inappropriate in these circumstances, and may even be harmful for public health.

Professor Elena Semino’s presentation and the discussion that followed shed light on an issue that is rarely at the forefront of our minds as cancer researchers. It emphasised the importance of language in how we understand and process our experiences, and how we express our emotions and feelings. Importantly, it also highlighted that the ways we choose to talk about cancer may positively or negatively influence patient experiences and public health. As we get better at preventing, detecting, diagnosing, and treating cancer, it will be interesting to see how the language we use to talk about cancer evolves in the future.

References
Graystone A. (2013) Viewpoint: Did Richard Nixon change the way people describe cancer? BBC News Magazine.

Hauser DJ, Schwarz N. (2014) The War on Prevention: Bellicose Cancer Metaphors Hurt (Some) Prevention Intentions. Personal Soc Psychol Bull 41:66–77.

Scherer AM, Scherer LD, Fagerlin A. (2015) Getting ahead of illness: using metaphors to influence medical decision making. Med Decis Mak 35:37–45.

Semino E, Demjen Z, Demmen J, Koller V, Payne S, Hardie A., et al. (2015) The online use of Violence and Journey metaphors by patients with cancer, as compared with health professionals: a mixed methods study. BMJ Support Palliat Care 1–7.

Semino E. (2014) A ‘metaphor menu’ for cancer patients. Ehospice UK.

‘One size fits all’ or ‘made to order’? – How beliefs might explain the sociodemographic profile of people who take part in cancer screening

By Siu Hing Lo, on 21 August 2015

Many studies have looked at the sociodemographic profile of people who take part in cancer screening. For example, one study from our research group showed that people living in the most affluent areas in England were almost twice as likely to participate in bowel cancer screening as those in the most deprived areas (von Wagner et al. 2011 ). Other studies have, among others, shown differences in participation rates between married and unmarried people (Lo et al. 2013 ) and white and non-white groups (Szczepura et al. 2008 ). In our latest study , we examined why there are sociodemographic differences in bowel cancer screening participation.

To do this, we related the sociodemographic differences in participation to key beliefs about bowel cancer screening. These included beliefs about the usefulness of screening even if you do not have symptoms, whether people who are important to you (e.g. family and friends) take part or think you should take part in screening, and how disgusting or embarrassing the screening test is.

Sociodemographic differences in screening participation appeared to be largely explained by beliefs about screening.   However, not all beliefs were related to sociodemographic differences in the same way. Socioeconomic differences in participation were related to all key beliefs. In contrast, differences by marital status were mainly related to beliefs about other people, and ethnic differences were only related to the misconception that screening is only for people with bowel-related symptoms.

When interpreting these results, a few strengths and limitations of this study should be noted. The data were collected through a nationwide population-based omnibus survey on a variety of topics, mostly unrelated to health. The main advantage of this method is that the survey sample was broadly representative of the general population. Nevertheless, our results need to be interpreted with caution due to the cross-sectional nature of the survey. We could not examine causality, and the relationships between sociodemographics, beliefs and screening participation might have been over-estimated.

Notwithstanding, our findings suggest that distinct cognitive patterns may underlie sociodemographic differences in screening participation rates. These need to be well-understood before we can reduce any inequalities in these important health behaviours. Although some beliefs seem to be common to different types of sociodemographic inequalities, others are not. Future research should examine whether ‘tailored’ (made to order) invitation materials are more effective at engaging different demographic groups than the current ‘one size fits all’ approach.

References

Lo, S.H., Waller, J., Vrinten, C., Kobayashi, L. & C. von Wagner (2015), ‘Social cognitive mediators of sociodemographic differences in colorectal cancer screening uptake’ BioMed Research International, in press.

Lo, S. H., Waller, J. Wardle, J. & C. von Wagner (2013), “Comparing barriers to colorectal cancer screening with barriers to breast and cervical screening: a population-based survey of screening-age women in Great Britain,” Journal of Medical Screening, 20:2, 73–79.

Szczepura, A. Price, C. & A. Gumber (2008), “Breast and bowel cancer screening uptake patterns over 15 years for UK South Asian ethnic minority populations, corrected for differences in socio-demographic characteristics,” BMC Public Health, 8, article 346.

von Wagner, C. Baio, G., Raine, R. et al. (2011), “Inequalities in participation in an organized national colorectal cancer screening programme: results from the first 2.6 million invitations in England,” International Journal of Epidemiology, 40: 3, 712–718.

Timely diagnosis of cancer matters for patient experience

By rmjdgly, on 2 August 2015

 

We are delighted to host a blog on a recent collaborative paper, written by guest blogger Silvia Mendonca, Statistician, Cambridge Centre for Health Services Reserach, University of Cambridge.

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By Silvia Mendonca

In our recent paper we studied how pre-diagnosis experience affects subsequent care experience in cancer patients (1). Our findings suggest that patients who experienced more pre-referral consultations in primary care are more likely to be less satisfied with their care. As perhaps could have been expected, the associations found were stronger for questions involving primary care compared to hospital care.

We used data from over 70,000 patients who responded to the English Cancer Patient Experience Survey. In this survey patients report the number of pre-referral consultations with a GP, which was used as a marker of diagnostic delay. As different patients may vary in their tendency to give critical responses in general, we adjusted our analysis using a response tendency item. This item was calculated using mixed effects models and included responses to several questions from the survey.

This work further supports efforts aimed at reducing time to diagnosis and amplifies previous evidence where patients expressed preference for having cancer investigations at low risk levels (2).

The fact that associations found were stronger for aspects involving primary care has implications for follow up involving general practice.

The research was covered by BMJ News and general media.

1. Mendonca S.C. et al. Pre-referral general practitioner consultations and subsequent experience of cancer care: evidence from the English Cancer Patient Experience Survey. Eur J Cancer Care (Engl). 2015 Jul 30. doi: 10.1111/ecc.12353. [Epub ahead of print]

2. Banks, J., Hollinghurst, S., Bigwood, L., Peters, T.J., Walter, F.M., Hamilton, W. Preferences for cancer investigation: A vignette-based study of primary-care attendees (2014) The Lancet Oncology, 15 (2), pp. 232-240.

“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.

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 rmjdlro, 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 F 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 F 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