‘Health Chatter’: Research Department of Behavioural Science and Health Blog
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    A ‘fuzzy’ distinction between different groups of cervical screening non-participant

    By Laura Marlow, on 17 August 2018

    Over the last two years we have blogged about our work exploring different groups of non-participants at cervical screening (aka the smear test). We have shown that women who do not attend for their smear test can be either unaware of screening, unengaged with screening, undecided about screening, intending to get screened (but not yet got around to it) or they may have decided not to get screened.

    In our most recent study funded by Cancer Research UK and published in Psycho-oncology, we interviewed women aged 26-65 years (n=29) from these different ‘non-participant’ groups to gain a deeper understanding of their screening decisions. We found that there are differences in the salience of particular barriers to screening, for example women who intend to get screened often focus on more practical barriers to screening and women who have decided not to attend often focus on past negative experiences of screening. However, there were also examples where even within groups of non-participants women had quite varied views e.g. some decliners felt the smear test procedure was not something they wanted to do, even though they knew the risks, other decliners thought smear tests were no big-deal but didn’t think they needed one because they weren’t at risk of cervical cancer.

    Our findings also suggested that the distinction between different non-participant groups is ‘fuzzier’ than we originally thought. For example, many of the undecided women described not really wanting to have a smear test, but feeling less strongly about this than decliners. For women who intended to get screened, there were some that did not really want to attend, but felt they ought to (more similar to decliners or undecided women), while other intenders were happy to have a smear but practical barriers stopped them from participating.

    This ‘fuzziness’ could mean that distinct interventions for one type of non-participant group may not work for some people in that group, but might work for others classified in a different way. Alternatively, there may be one intervention that could be successful across groups for different reasons, for example HPV self-sampling could address practical barriers (relevant to intenders) and concerns about the screening procedure (relevant to some decliners).

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

    By Alex Ghanouni, 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.

    Smokers’ interest in a national lung cancer screening programme

    By Jo Waller, on 4 May 2018

    By Samantha Quaife and Maria Kazazis

    Lung cancer is typically diagnosed too late; a major reason why it remains the leading cause of cancer death both in the UK and globally. Catching lung cancer early drastically improves survival, but often there are no symptoms in the early stages, or at least no symptoms that initially cause alarm.

    Therefore, a national lung cancer screening programme is being considered in the UK. This would use a special type of CT scan with a lower dose of radiation (a LDCT scan) to screen for nodules in the lungs which could be early cancers. There is evidence from a large US trial that this decreases deaths from lung cancer among current smokers and former smokers aged 55-74 who have a significant smoking history. However, there are risks as well as benefits to screening and the UK are waiting for further European evidence.

    One potential problem our research is trying to address is low uptake. For screening to work best, those taking part should be at high risk of developing lung cancer (usually due to a long history of tobacco smoking among other factors). Smoking is more common within socioeconomically deprived communities meaning that a greater proportion of adults are at high risk when compared with more affluent communities. However, in both Europe and the US, fewer smokers and individuals of a lower socioeconomic position, have taken part in screening when offered by research trials. But trial participation is different. What we don’t know is to what extent this problem might exist in the context of a national NHS programme.

    In our newly published paper, funded by Cancer Research UK and the Medical Research Council, we surveyed 1464 adults aged 50-70 years as part of our Attitudes Behaviour and Cancer-UK Survey (ABACUS). We asked participants how likely they were to take part in screening following three hypothetical screening invitation scenarios. We also asked participants how much they worried about lung cancer, whether they thought the chances of surviving early stage lung cancer were good and whether they thought (again hypothetically) they would have surgery if screening found an early stage cancer. We compared current smokers with non-smokers on all these beliefs.

    Most participants (97%) thought screening was a good idea and intended to be screened, regardless of their smoking status (>89% of current and former smokers). This is encouraging in principle, but intentions are not always the most accurate way of predicting actual screening behaviour. Indeed, we also found that smokers reported worrying more about lung cancer, and were less likely to think the chances of surviving lung cancer (when detected early) are good, or think they would opt for surgery (the most effective treatment for early stage lung cancer). It’s possible that these negative perceptions may deter smokers from screening. Importantly though, beliefs are modifiable. To optimise participation among those at high risk, we should communicate the screening offer in a way that minimises excessive worry, clearly explains the improvement in survival for early disease and dispels any misconceptions about surgical treatment.

    Reference: Quaife, S. L., Vrinten, C., Ruparel, M., Janes, S. M., Beeken, R. J., Waller, J., McEwen, A. (2018). Smokers’ interest in a lung cancer screening programme: a national survey in England. https://doi.org/10.1186/s12885-018-4430-6

    Prevalence of beliefs about actual and mythical causes of cancer

    By Jo Waller, on 26 April 2018

    Lion Shahab, Jennifer A. McGowan, Jo Waller, Samuel G. Smith

    Approximately one third to one half of cancer diagnoses are preventable by changes to lifestyle behaviours. In Europe, at least 1.1 million cancer cases per year could be prevented if people had healthier lifestyles. According to the latest (4th) European Code Against Cancer (ECAC), established cancer risk factors include active and passive smoking, alcohol consumption, being overweight or obese, being physically inactive, have a poor diet, being exposed to ultraviolet radiation (e.g. from the sun), and infection with human papillomavirus (HPV). However, many other unverified (‘mythical’) causes of cancer appear in tabloids and on social media. Recognising the difference between the real and the ‘mythical’ cancer causes can be difficult. Conflicting messages can make it harder for people who are trying to reduce their cancer risk to place their efforts into effective activities.

    In a study published in the European Journal of Cancer, we report findings from the 2016 Attitudes and Beliefs About Cancer-UK Survey of 1,330 UK participants. The survey explored the public’s beliefs about actual cancer causes (smoking, alcohol consumption, low physical activity, low fruit and vegetable consumption, being overweight) and mythical causes of cancer. Awareness of actual causes of cancer was low, with participants on average on being able to identify half of the causes of cancer. More than a third (40%) of adults did not know that being overweight was associated with an increased cancer risk and the same number did not recognise sunburn as a cancer risk. Almost three in four adults (71%) did not know that HPV is associated with cancer. Being able to identify correct causes of cancer was related to the likelihood of participants not smoking, and eating five or more fruit and vegetables a day.

    Participants could, on average, only identify 36% of mythical causes of cancer as incorrect. Of these, adults were most likely to believe that stress (43%), food additives (42%) and electromagnetic frequencies (35%) caused cancer. A quarter (26%) of participants believed that mobile phones could cause cancer. Interestingly, adults who endorsed the actual causes of cancer were also more likely to also believe in the mythical causes, suggesting a great level of confusion between the two.

    If people are to make informed decisions about their lifestyle they need an accurate understanding of cancer risk factors. Our survey shows that there is a large degree of confusion among the general public regarding those risks. It seems that the numbers of people who believe in the unfounded causes of cancer has increased over the last decade. This could be linked to the way people now access information and the rise of so-called “fake news”. Looking for information from reputable websites like NHS Choices and Cancer Research UK is a good way to avoid this. Cancer Research UK even has a page presenting evidence to debunk some the myths, which could be a useful resource for people who are understandably confused.

    When women are too busy for cervical screening or have had a bad experience, could HPV self-sampling be an appealing alternative?

    By Laura Marlow, on 17 April 2018

    By Kirsty Bennett and Laura Marlow

    In the UK, women aged 25 to 64 are regularly invited for cervical screening (the ‘smear test’ or ‘Pap test’). While uptake of cervical screening is generally high, it has been declining in recent years, and in 2017 just over a quarter of women did not attend screening. Studies exploring screening non-attendance suggest a wide range of reasons that women do not go, including practical barriers such as difficulties arranging appointments, emotional barriers including embarrassment and fear of what the test might find and low perceived risk of cervical cancer.

    One of our previous blogs described how most non-participants at screening are aware of screening and have made a decision about future attendance. The majority of these intend to go despite currently being overdue or unscreened, but some have made an active decision not to attend for screening in future. In our latest study, funded by Cancer Research UK as part of a larger project on cervical screening, we explored barriers to cervical screening among 426 women who had made an active decision not to attend in the future, and compared them with 117 women who intended to be screened in the future.

    Participants were shown sixteen possible barriers which covered a variety of reasons why some women might not attend screening, and they were asked to choose the ones that applied to them. Women who had made an active decision not to be screened were more likely than the ‘intenders’ to say that screening wasn’t relevant to them because of their sexual behaviour (reported by 27%).  Cervical cancer is caused by a sexually transmitted infection (HPV, or human papillomavirus – see below), so some women had decided not to go for screening because they were no longer sexually active, or had been in the same relationship for a long time.  They also reported having more important things to worry about than screening (reported by 12%) and some said they had weighed up the risks and benefits and decided it was not worth getting screened (reported by 13%).

    We went on to ask women about their interest in HPV self-sampling. HPV is a very common sexually transmitted infection and nearly all cases of cervical cancer are caused by this virus. It can take many years for an HPV infection to develop into cervical cancer so a woman’s current sexual behaviour does not necessarily reflect her current risk. Although it’s not offered by the NHS Cervical Screening Programme at the moment, HPV self-sampling allows women to collect a sample themselves, usually by using a vaginal swab. The sample is then sent to a laboratory and tested for HPV. Many of the women who had decided not to attend cervical screening (66%) indicated that they would be interested in self-sampling. Self-sampling seemed to be particularly appealing to women who reported a bad experience of screening in the past, and those who were too busy or embarrassed to attend. Shifting the perceived cost-benefit ratio for these women by offering HPV self-sampling might increase screening participation in this group. Studies in several countries have found that offering self-sampling to women who don’t attend for screening can be a very effective way of increasing participation.  With the shift to HPV primary screening planned for 2019 in England, self-sampling may become a feasible option for some women.

    Reference:

    Kirsty F Bennett KF, Waller J, Chorley AJ, Ferrer RA, Haddrell JB, Marlow LAV. Barriers to cervical screening and interest in self-sampling among women who actively decline screening. Journal of Medical Screening. Published online.

    Unpicking the differences between types of cervical screening non-attenders

    By Laura Marlow, on 21 March 2018

    Every year around 28% of women who are eligible for cervical screening do not attend as recommended. Last year we blogged about a paper we had published exploring how these women can be divided into five broad sub-types; 1) unaware of screening, 2) unengaged with screening, 3) undecided about whether to go for screening, 4) decided not to go for screening and 5) decided to go but not yet gone. We also found some patterns in the way these different non-attender types are distributed across different groups of the population. For example, we found that women from ethnic minority groups were more likely to be unaware of screening and older women were more likely to have decided not to go. Understanding these patterns will help us to decide how interventions might be shaped differently for different types of non-attenders. For example, since women from ethnic minority groups are more likely to be unaware of cancer screening, targeted public health campaigns aimed at raising awareness within ethnic minority communities could be beneficial.

    More recently, we have been delving a bit deeper and have tried to unpick some of the psychological and behavioural differences between the most common non-attender groups. Published in the journal Preventive Medicine this week, our new work shows some interesting findings. Most notably we showed that women who are unaware of screening tend to be more fatalistic, both about life in general and about cancer. They also have more negative beliefs about cancer outcomes. Women who had decided not to be screened frequently perceived themselves to be at lower risk of cervical cancer. And for women who were unengaged with screening, both more fatalistic beliefs and lower perceived risk were relevant. Health behaviours also varied between the different groups, with unaware women less likely to have seen a GP recently, and unengaged women less likely to seek out health information and more likely to actively avoid cancer information in the media.

    This work will help us to identify the content of the messages that we might use for specific types of non-attenders. Interventions to raise awareness of screening should include messages that address fatalistic and negative beliefs about cancer. By contrast, information for women who have decided not to be screened may need to ensure they have an accurate knowledge of their risk of cervical cancer and that they understand the benefits of screening. This will help make sure women who decide not to take part are making an informed choice. Our next step it to outline what these interventions might look like – watch this space!

    Cervical screening without a speculum: a future option for older women?

    By Laura Marlow, on 19 February 2018

    In the UK, women are invited for cervical screening (the ‘smear test’) between the ages of 25 and 64, and although uptake is high it has been falling for some years across all age groups (1). A number of studies have focused on improving uptake among younger women (2), but a recent BMJ article called for work to focus on the needs of ‘older’ women too, given that half of all cervical cancer deaths are in women over 50 (3). One particular issue for older women can be that screening becomes more painful following the menopause. Lower oestrogen levels can cause thinning and dryness of the vaginal walls and it’s estimated that half of all post-menopausal women have these symptoms. This can mean that inserting the speculum (the instrument used to open the vagina for examination) is particularly painful for some ‘older’ women. Dr Anita Lim at King’s College London has been awarded funding by Cancer Research UK to explore a different procedure for collecting samples without a speculum. Samples collected without the speculum would be tested for human papillomavirus (HPV) and women would only need to have further examination if they were found to be HPV positive.

    Collaborating with Dr Lim, we led some exploratory work to assess the acceptability of this potential alternative (4). Published online last week in the Journal of Medical Screening, the work included focus groups and interviews with 38 women aged 50-64 who had a variety of cervical screening histories (‘up to date’, ‘overdue’ and ‘never been screened’). As expected, many of the women reported negative experiences of the speculum during cervical screening and found its insertion was sometimes painful, particularly after the menopause. Women were generally positive about the idea of screening without a speculum and thought it would be less invasive than the current procedure. However, some women were concerned that this method could be less accurate, because the swab might touch other areas and collect unwanted cells, and the sample-taker would not be able to clearly see the cervix without a speculum. Women said they would want sufficient information and reassurance, particularly about the effectiveness of non-speculum sampling compared to current cervical screening.

    The findings from this study suggest that HPV testing on clinician-collected samples taken without a speculum could be an acceptable alternative to conventional cervical screening. It might be particularly useful for older women who have had difficulty with the speculum examination, potentially due to post-menopausal changes. Dr Lim will continue to explore the acceptability of introducing clinician-collected non-speculum sampling alongside assessing how well the test works, but preliminary work suggests introducing this procedure could improve screening uptake among 50-64 year-olds who have put off attending.

    1. Screening and Immunisations team. Cervical screening programme: England, 2016-17. Health and Social Care Information Centre, 2017, p. 1 – 76.
    2. Kitchener HC et al. A cluster randomised trial of strategies to increase cervical screening uptake at first invitation (STRATEGIC). Health Technol Assess 2016, 20(68):1-138.
    3. Sherman SM et al. Cervical cancer is not just a young woman’s disease. BMJ 2015, 350:h2729.
    4. Freeman et al. Acceptability of non-speculum clinician sampling for cervical screening in older women: A qualitative study. JMS, in press.

    Forming habits and improving self-regulatory skills help people lose weight

    By Moritz P Herle, on 16 October 2017

    by Nathalie Kliemann and Becca Beeken

    Obesity is a growing public health concern. Individuals with obesity (Body Mass Index ≥30) are at increased risk for a range of diseases including cardiovascular diseases and a number of cancers. There is therefore a need to find effective ways to help individuals with obesity to lose weight. Evidence from recent studies suggests that brief interventions based on habit theory may be a novel approach. Interventions based on habit theory encourage people to repeat certain behaviours in a consistent context (in the same place or at the same time of day). This helps to make the behaviours more automatic (do them without really thinking about them) over time. These interventions also encourage people to set goals, plan when they will perform their behaviours, and monitor how they are getting on during the habit formation process. This can improve people’s ability to control their behaviours or their ability to ‘self-regulate’. Self-regulation refers to the ability to control behaviours, attention and thoughts to achieve a goal (e.g. avoid eating chocolate to lose weight).

    Our research group at University College London developed a habit-based weight loss intervention, called 10 Top Tips (10TT), with the charities Cancer Research UK and Weight Concern. The 10TT are a set of everyday healthy eating and activity behaviours that are described in a leaflet alongside advice for turning the behaviours into habits. The leaflet recommends making specific plans, repeating the behaviours in a consistent context, and monitoring performance daily using a log book.

    The leaflet was tested in a randomised controlled trial in primary care. Patients with obesity from 14 GPs across England were invited to take part. Those who consented were randomly allocated to 1 of 2 groups. Individuals in one group were given the 10TT by a practice nurse in an appointment at their GP surgery. The other groups were referred to the usual care offered by their GP.  Initial results of this trial demonstrated that patients who received the 10TT intervention lost almost one kilo more than those receiving usual care. Furthermore, patients who received 10TT reported the behaviours had become more automatic over three months. This suggests that 10TT was more effective at establishing new habits by the end of the intervention period. In the present study, we aimed to understand the effect of 10TT on self-regulatory skills and whether changes in self-regulatory skills and automaticity explained why the intervention helped people to lose weight over three months.

    In our latest research we found that over three months patients who were given 10TT reported greater increases in self-regulatory skills than those who received usual care. Changes in self-regulatory skills and automaticity over 3 months appeared to, at least partially, explain how the intervention helped people to lose weight. Participants who monitored their behaviours for longer, recorded their weight more often, and made more plans, experienced the greatest changes. This findings support the proposition that self-regulatory training and habit formation are important features of weight loss interventions.

    We hope the results of our research will improve our understanding of how interventions based on habit theory work. These findings could guide the development of more effective habit-based weight loss interventions to help people to lose weight.

    In future studies, we aim to explore whether the effects of the 10TT intervention can be enhanced through making it easier to use the log books (e.g. through digital self-monitoring via a mobile phone app). We are also interested in whether adding self-regulatory training to help people break existing habits (as well as forming new habits) would increase weight loss.

     

    Article link: Kliemann N, Vickerstaff V, Croker H, Johnson F, Nazareth I, Beeken B. The role of self-regulatory skills and automaticity on the effectiveness of a brief weight loss habit-based intervention: secondary analysis of the 10 top tips randomised trial. International Journal of Behavioural Nutrition and Physical Activity. 2017, 14:119.

     

     

    Can technology help cancer survivors increase physical activity?

    By Moritz P Herle, on 8 August 2017

    by Anna Roberts

    Over 14 million people are diagnosed with cancer worldwide each year, and this is expected to rise to 22 million over the next two decades. Thankfully, due to improvements in early diagnosis and treatment, the number of people who are surviving longer after cancer is also increasing.

    However, many people diagnosed with cancer experience long-lasting and debilitating side effects (e.g. fatigue, pain, sleep difficulties, anxiety and depression), all of which can substantially reduce quality of life. Health behaviours, such as physical activity and diet could prolong survival, reduce the risk of cancer returning and have been shown to reduce many of these common side effects. However, it is many of these side effects which make physical activity more difficult to do following a cancer diagnosis, and the number of cancer survivors who meet the recommended 150 minutes of moderate-vigorous physical activity per week is lower than for people who have never had cancer.  Therefore, there is a need for interventions which can help support cancer survivors’ to take part in physical activity following their diagnosis.

    Digital interventions use technologies such as text messaging, email, mobile apps, social media, websites and patient portals can be used to support health behaviours such as physical activity and diet. Digital interventions have increased in popularity as they are easy to access, tend to cost less than face-to-face support and therefore have the ability to reach a large number of people. This is especially true given the ever increasing number of UK adults who access the internet and own a smartphone.

    In the last few years, the number of studies which have looked at how effective these types of technologies are at improving cancer survivors’ physical activity participation and diet quality has rapidly increased. In our new study, we reviewed all of the published literature to see how effective digital technologies are at increasing physical activity or improving dietary quality among people diagnosed with cancer. We also looked at the effect of these types of interventions on body mass index (BMI) and other cancer-relevant outcomes measured in the studies, such as fatigue, sleep quality, anxiety and depression and quality of life.

    15 studies were included in the review, all of which evaluated the effect of a digital technology on physical activity and five studies also evaluated the effect on dietary quality. By statistically combining the data from the studies (also known as a meta-analysis), we were able to estimate that digital technologies can increase cancer survivors’ moderate-vigorous physical activity by approximately 40 minutes per week. This technique also allowed us to show that digital technologies can significantly reduce BMI, however there was no evidence of an improvement in cancer survivors’ quality of life. While there was evidence for a reduction in fatigue, this was not large enough to be deemed statistically significant. Meta-analysis was not possible for all of the outcomes we were interested in (either due to the variation between studies in the way in which they were measured or because of the small number of studies which assessed these outcomes). Of the 5 studies which assessed the effect of digital interventions on diet, only 2 showed an improvement in dietary quality. There was no evidence of any improvement in anxiety or depression and while only 2 studies evaluated the effect on sleep quality, both showed a significant improvement in sleep outcomes.

    However, as this is an emerging field of research, the quality of the included studies was varied. For instance, all of the studies asked participants to report their own physical activity participation using questionnaires. These types of questionnaires are notorious for overestimating actual physical activity levels. Furthermore, the length of follow-up in these studies was relatively short which makes it difficult to understand the longer-term impact of these types of interventions. There was also large variation between the studies in terms of the types of digital interventions, the types of cancer and the way in which the outcomes were measured. This makes it very difficult to ascertain what types of intervention are most effective, for which outcomes, among which groups of cancer survivors. While the results of this review show that the use of digital technologies in this context appears promising, we also call for larger, high-quality studies with objective measures of physical activity and longer follow-up periods.

    Article link: Roberts AL, Fisher A, Smith L, Heinrich M, Potts HWW. Digital health behaviour change interventions targeting physical activity and diet in cancer survivors: a systematic review and meta-analysis. Journal of Cancer Survivorship, 2017.

    I’ve never heard of it; I don’t want to; it’s on my list

    By Laura Marlow, on 3 July 2017

    Authors: Amanda Chorley, Laura Marlow, Jo Waller

    One of our previous blogs discussed how rates of cervical screening (aka the smear test, or pap test) have been declining in the UK. Last year, screening uptake rates fell to 72.7%, meaning that over a quarter of women had not been screened as recommended (1). A better understanding of why women are not being screened is vital. If women are making informed decisions not to attend this is perfectly acceptable, but if women do not understand cervical screening or find it difficult to attend for other reasons (e.g. inconvenient appointment times), interventions to address this are important. Treating women who do not attend screening as a single group of “non-participants” means those with very different screening experiences and intentions are considered to be the same. Unsurprisingly this means that “one size fits all” interventions to increase screening participation do not have large effects, as they are unlikely to be suited to individual women’s differing needs.

    In our latest study published in the European Journal of Cancer last week, we used the Precaution Adoption Process Model (PAPM)(2) to try and improve our understanding of the ways in which women who do not attend screening may differ. The PAPM is a model from behavioural science which states that before carrying out a health behaviour (in this case cervical screening), a person must move through a number of stages. A person must first be aware of the health behaviour and engaged with it before they can make a decision whether or not to carry it out. If they do decide to carry out the behaviour, they must then overcome any barriers which may be in the way of this (e.g. getting to the screening appointment). Importantly, the PAPM also includes the possibility for people to make an active decision to not participate in the behaviour. By classifying women according to the PAPM we hoped to identify what the most common type of screening non-participant is, and whether women within a particular group tend to have shared characteristics.

    793 (27%) of the 3113 women we surveyed were either overdue for screening (including those who had never had a smear test) or said they did not plan to go for screening when next invited. Of these non-participating women, just over half said that they do intend to go. These women tended to be younger than women who were up to date with screening, and were more likely to be single and from less affluent backgrounds. Perhaps more surprisingly, given the fact that all should have received an invitation and leaflet about screening as part of the NHS programme, 28% of non-participating women said that they had never heard of cervical screening, smear or pap tests, even after being shown a photo of the procedure. These women were more likely to be younger and from ethnic minority and less affluent backgrounds, and to have English as a second language. Finally, 15% of non-participating women said that they had made a decision not to be screened in the future. These women tended to be older, and most had been screened before. As with the other two groups, they were also more likely to be from less affluent backgrounds.

    The differences between these groups of non-participants show how important it is to consider the different reasons for non-participation. Changes such as more flexible clinic hours or text message reminders may help women who do want to go for screening but have found it hard to get around to it. However, for women who are unaware of cervical screening, more accessible information about the programme is a vital first step towards making an informed choice about whether to participate or not. As we found that unaware women were more likely to be from ethnic minority backgrounds and less likely to speak English as their first language, it may be helpful to provide information in more languages and through TV or radio advertisements rather than just using written materials. Choosing not to be screened is a legitimate choice, and one that needs to be respected by medical professionals. However, in order for women to make an informed choice it is important that they have access to relevant information, including the benefits, risks, and limitations of screening. For some of the women who have decided not to go in the future, it may be the case that they have sought out this information. For other women the decision not to go for further screening may be due to a previous bad experience.

    Our survey goes some way to showing that there is not just one type of cervical screening non-participant, but different groups of women with different experiences, choices, and needs. In the future we hope to look further into these differences, both between and within the different groups described in this post.

    1. Screening and Immunisations team ND. Cervical screening programme: England, 2015-16. Health and Social Care Information Centre, 2016, p. 1 – 76.
    2. Weinstein N. The Precaution Adoption Process. Health Psychology. 1988; 7: 31.