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Could a leaflet help catch cancer earlier?

By Jo Waller, on 4 May 2016

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

Encouraging people to seek help

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

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

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

 

In this study Leaflet 1, we uLeaflet 2sed questionnaires to measure the impact of the leaflet in the short-term. We asked 464 women about their symptom knowledge, the things that might put them off going to the doctor if they had gynaecological symptoms, and how quickly they thought they would seek help for a range of symptoms. We also asked about how anxious they were feeling right now, so we could see if the leaflet raised anxiety levels. Women then spent some time reading the leaflet before filling in another questionnaire.

What did we find?

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

What next?

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

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

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

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.