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Making it easier to book for cervical screening

By Laura Marlow, on 12 July 2019

Authors: Mairead Ryan, Jo Waller, Laura Marlow

Over a quarter of all women who are eligible for cervical screening in Great Britain are currently overdue (that’s more than a million women). In a previous blog, we described our work showing that around half of these women want to be screened, but have not got around to going. When we talked to women about practical barriers to screening; they mentioned how the current booking process can be difficult and inflexible. In this piece of research, we wanted to explore how women feel about other booking options that might help them make the leap from intending to go for screening to actually booking their appointment.

Published in BMJ Open this week, our survey of 614 women found that half find it difficult to get through to a receptionist, 31% find it difficult calling during GP opening hours and 31% forget to book an appointment altogether. Women who were currently overdue for screening reported more practical barriers than those who were up-to-date. They were also more likely to say they might forget to book an appointment.

Women were asked how acceptable they would find different ways of receiving their screening invitation. Posted letters, which is how women are currently invited, were the most acceptable option (93%), but most women said they would be happy to receive their invitation by text-message (81%), mobile phone-call (76%) or email (75%).

We also asked women about alternative ways of booking their appointment. We found that many would consider booking online, either through a website on a computer (60%) or using their smartphone (59%). Younger women were far more likely to be happy with online booking and women who reported more barriers to booking an appointment showed greater interest in using online booking methods.

We asked women who did not like the idea of email or text invitations why this was and the most common concerns centred around privacy or ‘missed’ invitations. Using multiple modes to invite women to screening, i.e. utilising text messages alongside traditional paper invitations, could be a good option. In fact, text message reminders are already being rolled out across London.

Online booking options could overcome the most common practical barriers highlighted by participants, including ‘difficulty getting through to a receptionist’ and ‘difficulty calling the practice during opening hours’. While online booking is an option in some GP practices already, the current screening invitation letter doesn’t mention this. Signposting online booking services to women when they are invited for screening may be an effective way of improving the appointment booking process. But ensuring that traditional telephone booking options remain available is important for older women who may not be so comfortable with online booking.

Can we help the public understand the concept of ‘overdiagnosis’ better by using a different term?

By rmjdapg, on 28 June 2018

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

We have previously written about ‘overdiagnosis’ – the diagnosis of an illness that would never have caused symptoms or death had it remained undetected – and how the majority of the public are unfamiliar with the concept and find it difficult to understand. We have also looked at the various ways that health websites describe it in the context of breast cancer screening; we previously found that most UK websites include some relevant information, in contrast to the last similar study from 10 years ago. This led us to think about how it might be possible to better explain the concept to people. Although ‘overdiagnosis’ is the most commonly used label, its meaning is probably difficult to infer if people are unfamiliar with it (and most people are). We wanted to test whether other terms might be seen as more intuitive labels that would help communicate the concept to the public.

We carried out a large survey in which we asked around 2,000 adult members of the public to read one of two summaries describing overdiagnosis. These summaries were based on information leaflets that the NHS has already used extensively in England. We asked people whether any of a series of possible alternative terms made sense to them as a label for the concept described and whether they had encountered any of the terms before.

What did we find?

A fairly large proportion of people (around 4 out of 10) did not think any of the seven terms we suggested were applicable labels for the concept as we described it. We also found that no single term stood out as being seen as particularly appropriate. The term most commonly endorsed (“unnecessary treatment”) was only rated as appropriate by around 4 out of 10 people. Another important finding was that around 6 out of 10 people had never encountered any of the terms we suggested and that the most commonly encountered term (“false positive test results”) was only familiar to around 3 out of 10 people. You can read the full paper here.

What were our conclusions?

We were disappointed that we did not find a term that was clearly considered to be an intuitive label for the concept of overdiagnosis. However, this was not entirely surprising because we know from several studies that it is unfamiliar to most people. It is not a given that this will always be the case: Organisations like the NHS and health charities are continually telling the public about overdiagnosis in various ways and if the concept becomes more familiar and better understood, people may be more inclined to identify a term that makes sense and which can then be used to communicate the concept. It is also possible that terms other than the 7 we looked at might already be suitable. Since the terms we looked at were generally unfamiliar, one recommendation we can make in the meantime is that it might be better to avoid specific labels like “overdiagnosis” when communicating the issue to people; explicit descriptions might be more helpful.

Perceived weight discrimination linked to physical inactivity

By rmjdsey, on 8 March 2017

Rises in obesity prevalence over recent decades have corresponded with increasing stigmatisation of, and discrimination against, individuals living with obesity. Weight stigma is often justified on the basis that it might encourage people to lose weight, but a growing evidence base indicates that experiences of weight-related stigmatisation may in fact encourage behaviours that promote obesity.

A few small studies have indicated that people who face weight stigma are more inclined to avoid physical activity, but none have been able to clearly establish what effect experiencing stigma has on actual exercise behaviour.

In a new study published today in BMJ Open we explored the relationship between weight discrimination and physical activity. The research involved 5,480 men and women aged 50 years and older taking part in the English Longitudinal Study of Ageing, a large population-based cohort of middle-aged and older adults living in England.

Overall, one in twenty people said they had been discriminated against because of their weight, ranging from lack of respect or courtesy to being threatened or harassed. Rates of weight discrimination varied considerably according to how overweight a person was, from 0.9% of people with a body mass index (BMI) in the overweight range (25-29.9) to 13.4% of people with obesity (BMI greater than 30).

Importantly, we found that people who had experienced weight-related discrimination had almost 60% higher odds of being inactive and 30% lower odds of engaging in moderate or vigorous exercise once a week than their peers.

Interestingly, a person’s BMI in itself did not affect the relationship between weight discrimination and exercise, indicating that people who experience weight-related discrimination are likely to be less physically active, regardless of their weight.

There could be several reasons for our findings. People who feel stigmatised may be more self-conscious about exercising in front of others for fear they will attract undesirable attention, leading to embarrassment or teasing. They may also begin to believe the negative stereotypes against themselves as lazy and worthless, leaving them wondering why they should bother trying to be active.

Given the substantial benefits of being physically active for both physical and mental health, interventions that aim to reduce weight bias at a population level – for example through schools, local communities or national campaigns – may have greater impact on health than those that encourage people to lose weight. A Health at Every Size approach may be helpful in encouraging people to develop and maintain healthy habits, including regular physical activity, for the sake of health and wellbeing as opposed to weight control.

 

Article link:
Jackson SE, Steptoe A. Association between perceived weight discrimination and physical activity: a population-based study in English middle-aged and older adults. BMJ Open. 2017;7:e014592.
http://bmjopen.bmj.com/content/7/3/e014592.info

What does the UK public understand by the term ‘overdiagnosis’?

By rmjdapg, on 14 April 2016

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

In recent years, doctors and academics have become more and more interested in a problem referred to as ‘overdiagnosis’. There are several ways that overdiagnosis can be defined.

One particularly useful way is to think of it as the diagnosis of a disease that would never have caused a person symptoms or led to their death, whether or not it had been found through a medical test. In other words, even if a person had not had the test, the disease would never have caused them any harm.

Catching it early

It may not be obvious how this can happen. As an example, imagine a woman going for breast screening, which tries to find cancer at an early stage, before it starts causing symptoms.

The thinking behind this type of test is that if the disease is found early, it will be easier to treat and there is a higher chance of curing it. Most people are familiar with this idea that ‘catching it early’ is a good thing.

So, suppose a woman who has no symptoms goes for screening and the test finds cancer: she would usually go on to have treatment (e.g. surgery).

However, although she has no way of knowing for sure, it is possible that the cancer was growing so slowly that she would have lived into old age and died of something unrelated, without ever knowing about the cancer, had she not gone for screening.

The cancer is real but the diagnosis does not benefit the woman at all; it results in treatment that she did not need (‘overtreatment’). In fact, if she had not had the screening test, she would have avoided all the problems that come with a cancer diagnosis and treatment.

What research has found

If you find the idea of overdiagnosis counter-intuitive, you are not alone. Several studies have tried to gauge public opinion on the issue and found that this is a fairly typical view, partly because the notion that some illnesses (like cancer) might never cause symptoms or death is one that does not receive much attention and is often at odds with our personal experiences.

Results from an Australian study in 2015 found that awareness of ‘overdiagnosis’ is low – in a study of 500 adults who were asked what they thought it meant, only four out of ten people gave a description of the term that was considered approximately correct and these descriptions were often inaccurate to varying degrees.

For example, people often thought in terms of a ‘false positive’ diagnosis (diagnosing someone with one illness when really they do not have that illness at all), or giving a person ‘too many’ diagnoses.
Is this the same in the UK?

We wanted to find out whether this was also true in the UK. We asked a group of 390 adults whether they had come across the term ‘overdiagnosis’ before and asked them to describe what they thought it meant in their own words, as part of an online survey.

We found that only a minority (three out of ten people) had encountered the term and almost no-one (10 people out of all 390) described it in a way that we thought closely resembled the concept described above.

It was not always clear how best to summarize people’s descriptions but we found that people often stated that they had no knowledge or had similar conceptions to the Australian survey such as ‘false positives’ and ‘too many’ diagnoses.

Some descriptions were somewhat closer to the concept of overdiagnosis such as an ‘overly negative or complicated’ diagnosis (e.g. where the severity of an illness is overstated) but there were also some descriptions that we found more surprising such as being overly health-conscious (e.g. worrying too much about health issues).

Room for improvement

Many people who work in public health and healthcare believe that people should be aware of the possibility of overdiagnosis, particularly since they will eventually be offered screening tests in which there is this risk.

In this respect, our findings show that there is substantial room for improvement in how we inform the public about overdiagnosis. In part, this may be due to the term itself not having an intuitive meaning, in which case other terms might be more helpful (for example the term ‘unnecessary detection’).

This could be tested in future studies. Our findings also motivated us to find out the extent to which trusted information sources (such as websites run by the NHS and leading health charities) are already providing information on overdiagnosis.

We would like to share the findings from this study in a follow-up blog post. We will be posting this here soon.

This was originally posted on the BioMed Central blog network.

Making the headlines: HPV and oral cancer

By Rachael Dodd, on 7 March 2016

Many people are now quite familiar with the idea that a common virus – HPV or human papillomavirus – is linked with cervical cancer. Girls in school Year 8 are offered a vaccine to protect against it, and women are sometimes tested for HPV in the context of cervical screening. But fewer people know that HPV is also linked with oral cancer. In 2013, Michael Douglas talked to the media about the link between HPV and oral cancer in the context of his own diagnosis, and we were interested to see if this was used as an opportunity to raise public awareness of the link.

We know that media coverage can influence public awareness and perceptions about cancer. People have been shown to be more interested in disease prevention following a celebrity diagnosis. In the UK, the case of reality TV star Jade Goody (who died of cervical cancer in 2009) was associated with an increase in the number of women attending cervical screening. The NHS Be Clear on Cancer media campaigns have also been shown to be effective in increasing awareness of key symptoms for cancers and with more people seeking help from their GP.

Michael Douglas was interviewed by The Guardian in June 2013, and stated that his throat cancer was ‘caused by HPV which actually comes about by cunnilingus’. This statement was later retracted by his publicist, but not before it had received global media attention. This provided the media with a prime opportunity to discuss the link between HPV and oral cancer. But just what was discussed?

In our research paper we looked at UK newspaper articles mentioning HPV and oral cancer and found that there had been some coverage of the link going back as far as 2001, but there was a large peak in articles following Michael Douglas’ disclosure in June 2013. When we looked at the content of these articles, we found they covered Michael Douglas’ disclosure, some questioned if oral sex is risky and others discussed the vaccination of boys and general information about HPV.

Taking their cue from Douglas’ statement, a large number of articles mentioned oral sex as a cause of mouth cancer, with some reflecting on why HPV-related oral cancer might be twice as common in men as in women. An increase in the number of people having oral sex was suggested as a reason for the growing numbers of HPV-related oral cancers. It was also acknowledged that oral sex is a topic which could not have been discussed openly even recently.

Although most of the articles included some information around HPV and oral cancer, this often wasn’t detailed. Some articles communicated that the incidence of oral cancer is increasing, but less than 20 per cent of the articles communicated the important messages that 8/10 people will contract HPV in their lifetime and that HPV-related oral cancer has a better prognosis and survival.

There were also calls for boys to be vaccinated against HPV, as oral cancer affects both men and women. Campaigners believe giving boys the vaccination will help stop the ‘catastrophic rise’ in cancers. Some also viewed it as unethical to give the vaccination to girls and not to boys.

The UK media did regularly discuss HPV and oral cancer and the transmission of HPV via oral sex, but detailed information about HPV was generally lacking. Important messages to remember and communicate to others are that HPV is common, it is a result of normal sexual behaviour, and it has a better prognosis than oral cancers caused by smoking and alcohol.

Article link:

Dodd RH, Marlow LAV, Forster AS, Waller J. Print and online newspaper coverage of the link between HPV and oral cancer in the UK: a mixed-methods study. BMJ Open. 2016; 6:e008740.

http://bmjopen.bmj.com/content/6/2/e008740.full?keytype=ref&ijkey=a1QD2l1zZXkM6GX

A cancer false alarm could discourage people from checking out future symptoms

By Susanne F Meisel, on 6 February 2015

As I have discussed here, delays in a diagnosis of cancer are one reason why the UK fares worse in cancer survival than other countries . This has led to campaigns like this one to remind the public to go and get symptoms checked out early. However, most people who go and have tests will ultimately get the ‘all-clear’- in other words they will not be diagnosed with cancer. This is of course good news, however having experienced a false alarm might have some unintended consequences. It may impact on mood and anxiety levels long after the all-clear has been given. What’s more, a false alarm may influence future symptom appraisal because it may lead people to think that it’s just another false alarm, so they won’t bother to go to the GP again.

Our researchers looked at all available research studies which reported information on false alarms and subsequent symptom attribution or help-seeking published between 1990 and February 2014 to see whether this assumption was true. They included only studies that looked at adult patients who presented with symptoms and did not include studies where additional tests were required after routine cancer screening, because the effect of a false alarm may be different in this context.
Our researchers found 19 national and international studies that met their criteria. Six of these were carried out in the UK, three in other European countries, six in the USA, three in Canada and one in Australia. The most frequently studied cancer was breast cancer, followed by gynaecological, bowel, testicular, head and neck, brain cancer and multiple cancer sites.

Our researchers found that, as predicted, people often explained a delay in seeking help for a symptom due to being overly reassured by a previous false alarm. This was true across different types of cancer. Interestingly, a previous false alarm often resulted in normalising novel symptoms and attributing them to the previous benign diagnosis even in the case of symptoms occurring months or years after the false alarm. This finding is concerning, because having had an all-clear diagnosis in the past does not guarantee that you won’t develop cancer in the future. Therefore, it is really important to remain vigilant and go and get checked every time a new symptom appears, or a symptom won’t go away.

Feeling ‘foolish’ and under-supported the first time help was sought for a symptom was another important theme that emerged from the review. Patients who felt dismissed, and who felt that they did not get enough explanation about what to do if the symptoms did not go away or if new symptoms appeared were less likely to seek help in the future.

However, there were some limitations to the review – for example our researchers might have missed some studies as in the majority of cases they were not directly investigating the effects of false alarms; moreover, the ones they did find were based on small number of patients who were interviewed after they had been diagnosed with cancer . Therefore, we are planning to do some more research in the future which will specifically focus on the topic.

These findings highlight how important it is to provide balanced information to patients when they are investigated for possible cancer symptoms, making sure not to cause unnecessary anxiety and at the same time avoiding false reassurance. Furthermore, the results show that it is important to take patients’ concerns seriously and encourage patients to see a doctor promptly if they have new possible cancer symptoms or if symptoms don’t go away even if they have been checked before. Early diagnosis will only be successful if patients feel assured that they are not perceived as hypochondriacs or wasting the GP’s time.

Article Reference:Renzi C, Whitaker KL, Wardle J: Over-reassurance and undersupport after a ‘false alarm’: a systematic review of the impact on subsequent cancer symptom attribution and help seeking BMJ Open 2015;5:2 e007002 doi:10.1136/bmjopen-2014-007002   http://bmjopen.bmj.com/content/5/2/e007002.full#ref-11

 

 

More evidence that ‘obese’ is becoming ‘normal’?

By Susanne F Meisel, on 12 January 2015

The ‘obesity epidemic’ is a recurring theme within the media. So we might assume that the Great British population is more informed than ever on the topic. However, when our researchers carried out a study among obese adults to find out how they perceived their own weight they uncovered some surprising results.

The researchers looked at data from two surveys, conducted 5 years apart in 2007 and 2012, in which 657 obese persons (established through self-reported height and weight) were asked to select a descriptor for their own body weight. They could choose from the options: very underweight, underweight, about right, overweight, very overweight, obese. The results showed that the proportion of obese adults selecting the term ‘obese’ to describe their body size was very low in both sexes: 13% of women in 2007 and 11% of women in 2012, and less than 10% of men at both time points.

Now, of course the term ‘obese’ goes hand-in-hand with stigmatisation, which might well explain the reluctance to use it. The researchers did take this into consideration and went on to look at whether people were more likely to use the less controversial term ‘very overweight’. However, among women there was actually a decrease in the use of ‘very overweight’ over time and the proportion of obese women describing themselves as either ‘overweight’ or ‘about right’ increased accordingly.

This begs the question: why are people reluctant to use the terms ‘very overweight’ or ‘obese’ when describing themselves? Well, stigma might well play a part. Stigmatisation of those who do not meet society’s ideals for body shape is fuelled by the media and pop culture and may be compounded by representations of obesity in the news media, which often use images of extreme obesity when discussing body weight. This presents a challenge for health professionals whose use of these terms can be perceived as insensitive. It could also be that as a nation we increasingly see obesity as the norm. As we have become ‘bigger’, the social construction of these terms has shifted, so people who fall within these categories feel ‘normal’ when they compare themselves to those around them. This could have some troubling repercussions if it means that people are less likely to try to adjust their health behaviours as a result.

Reinstating ‘normal’ as the ‘norm’ is a challenge and maybe the use of this, and the related weight terminology, needs to be reconsidered altogether. If it is to remain considerable work needs to be done to reduce the stigmatisation that surrounds these terms.

Article reference: Johnson F, Beeken RJ, Croker H, Wardle J:Do weight perceptions among obese adults in Great Britain match clinical definitions? Analysis of cross-sectional surveys from 2007 and 2012. BMJOpen 2014;4:e005561.doi:10.1136/bmjopen-2014-005561

http://bmjopen.bmj.com/content/4/11/e005561.full.pdf