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How does testing HPV positive make women feel about sex and relationships?

Kirsty FBennett21 August 2019

A previous blog described how a new way of looking at cervical screening samples called primary HPV testing is being introduced into the NHS Cervical Screening Programme. In this post, we will describe the results from our recently published review which looked at whether testing HPV positive has an impact on how women feel about sex and relationships.

Why might testing HPV positive have an impact on sex and relationships?

Human papillomavirus (HPV) is a very common sexually transmitted infection (STI). It’s so common that most men and women will be infected with HPV at some point in their life, often without them knowing. Because of the sexually transmitted nature of HPV and with the introduction of HPV primary testing in England, we wanted to find out whether testing HPV positive could have an impact on sex and relationships. We reviewed all previous research that has explored the impact of an HPV positive result on sex and relationships among women.

What did we find?

There were 12 quantitative studies, which used surveys to collect data on a range of different outcomes such as sexual satisfaction, frequency of sex, interest in sex and feelings about partners and relationships. The results from these studies were very mixed with some studies suggesting that testing HPV positive did have an impact on sex and relationships and others suggesting that it didn’t.

Three main themes emerged from the 13 qualitative studies, which mainly used interviews to collect data:

  1. Source of HPV infection – women were concerned about where the infection came from and whether it came from a current or previous partner. Some expressed concerns that their partner had been unfaithful and wondered whether that was how they had acquired HPV.
  2. Transmission of HPV – concerns about passing on HPV to a partner were common. Some women were also worried about infecting their partner and their partner re-infecting them, not allowing the virus to be cleared and increasing the risk of cervical cancer.
  3. Impact of HPV on sex and relationships – Some women reported a reduced interest in and frequency of sex following HPV. HPV had a negative impact on some women’s sexual self-image. The risks associated with oral sex were mentioned by a few women who were concerned about passing HPV on to their partners in this way.

What do our findings mean?

It is possible that testing HPV positive may have an impact on sex and relationships for some women, however the extent of this is unclear. As none of the studies included in the review were in the context of primary HPV testing, this work highlights the need for further research in this context. As primary HPV testing is introduced more widely, it is important to understand the impact of an HPV positive result on sex and relationships to ensure that this does not cause unnecessary concern for women.

I don’t need cervical screening anymore – or do I?

LauraMarlow9 August 2019

By Laura Marlow, Mairead Ryan and Jo Waller.

Having cervical screening (smear tests) when you are older is just as important as when you’re younger, yet many women aged 50-64 years do not attend when invited. One reason older women decide not to attend anymore is because screening can become more uncomfortable after the menopause. We previously explored the potential for doing screening without a speculum as an alternative for these women. Another reason that some older women give for not attending their screens, is that they no longer feel it is relevant for them because they are no longer sexually active or have had the same partner for a long time.

Cervical cancer is caused by HPV, an infection which is passed on through sexual contact. But it can take a long time for HPV to develop into cervical cancer, so past rather than current sexual behaviour is what’s important. For an older woman, HPV can be the result of an infection acquired many years ago. In our latest study, published this week in Sexually Transmitted Infections, we wanted to see if explaining this long timeline between acquiring HPV and developing cervical cancer could help to increase the extent to which older women saw screening as relevant to them.

We recruited women aged 50-64 years who said they would not go for screening again and asked them to read some information about HPV. We then looked at changes in their perceptions of cervical cancer risk and intention to go for screening. All women read basic information about HPV but some of the women also read the statement:

Women aged 50-64 should be aware that HPV can take a long time to develop into cancer (10-30 years). This means that even if you have not been sexually active for a long time or have only had one partner for a long time, you could still be at risk of cervical cancer

Women who read this additional information were more likely to increase their perceived risk of cervical cancer and to increase their intentions to attend when next invited. In the group who read this information a quarter of women increased their intentions to be screened compared with just 9% of the control group (who only read basic information about HPV). While this study is experimental, and measured intention to go for screening (not actual behaviour), it suggests that explaining the long time interval between getting HPV and developing cervical cancer may be a useful way to increase cervical screening intentions in those who do not plan to attend.

Making it easier to book for cervical screening

LauraMarlow12 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.

A new test for cervical screening is being rolled out, but how do the screening test results make women feel?

JoWaller3 July 2019

By Emily McBride and Jo Waller

You might have heard that cervical screening is changing in England. If not, we’ve got you covered. In this post, we’re going to talk about the new cervical screening approach (called HPV primary screening), as well as our recently published research examining the way the test results make women feel.

What will happen under the new approach to cervical screening?

Soon all women who get screened in England will be tested for human papillomavirus (HPV), using an approach called HPV primary screening. HPV is a really common sexually transmitted infection which the body usually clears it on its own without it causing any problems. In fact, 4 out of 5 women have HPV at some point in their life. Sometimes, however, when the body can’t clear HPV, the virus can cause abnormal cells in the cervix to develop. With HPV primary screening, women who test positive for HPV will also have the cells in their cervix checked for any abnormal changes. However, women who test negative for HPV don’t get checked for abnormal cells because their risk of cervical cancer is really low – they don’t need to come back to screening again for another 3-5 years. Researchers have estimated that this new and improved screening approach will prevent an extra 500 cervical cancers a year in England. Screening can prevent cancer by picking up and treating cell changes before they develop into cancer.

How did women in our study feel after receiving their cervical screening test results?

Over the last few years, we’ve been doing a survey with women in areas where HPV primary screening has been tried out. We wanted to know how women felt about receiving the different test results at HPV primary screening compared with standard screening results. One test result was of particular interest to us because it’s new using this approach – HPV positive with normal cells (no abnormal changes). Women getting this result were asked to come back to screening 12 months later to see whether their body had cleared the HPV and to check no abnormal cells had developed. We thought it was possible that these women might feel anxious about being told they had HPV but having to wait 12 months to be screened again.

So what did we find? Well, women in the new group (HPV positive with normal cells) tended to be more anxious than those with normal results, and to be more worried about the result and about cervical cancer.  But reassuringly, those who had come back for a second HPV test 12 months after their first positive result had similar anxiety levels to those getting a normal result.  This suggests that being told you have HPV for the first time leads to feelings of anxiety and worry, but these are probably temporary for most women.

What do our research findings mean for cervical screening?

As the switch to HPV testing is introduced across the country, it’s really important for women taking part in screening to understand what the test is for and what the results will mean. Many women who go for screening don’t always read the information that’s sent with their invitation. This means practice nurses and other health professionals delivering screening have a key role to play in talking to women, making sure they understand what the change to the programme means, and encouraging them to read the new cervical screening leaflet. It’s also really important that health professionals and the cervical screening programme help support women who are anxious and are able to address the common concerns. We’re continuing to work closely with the NHS and Public Health England to help word HPV primary screening result letters. We also recently co-created a ‘Frequently Asked Questions’ information section to go alongside the HPV positive result letters, which we hope will help to mitigate unnecessary anxiety.

What do women who are overdue for cervical screening know about the risk factors for cancer?

JoWaller21 May 2019

Authors: Mairead Ryan, Laura Marlow and Jo Waller

Attending cervical screening between 25-64 years (every 3 or 5 years depending on age) means abnormal cells on the cervix can be picked up and treated before they develop into cancer. In the UK, about 3,100 women are diagnosed with cervical cancer each year and 850 die of the disease. This number could be reduced if more women were up-to-date with screening, but the proportion of women who are overdue for screening is increasing every year, across all age groups.

To make an informed choice about participation in screening, it’s important that women understand the things that increase their chances of developing cervical cancer. In particular, they need to know that their risk is higher if they don’t go for screening. In our study, just published in Preventive Medicine , we surveyed women aged 25-64 (793 participants) who were either i) overdue for screening or ii) did not intend to go for screening when next invited. The aim of the study was to assess whether women who decline screening are making this decision based on a good understanding of cervical cancer risk factors. We asked women to say whether they thought that certain risk factors could increase a woman’s chance of developing cervical cancer. All eight risk factors that we showed are known to increase cervical cancer risk, so women with good knowledge should have selected them all.


We found that many women had low awareness. Only just over half (57%) of the participants recognised that ‘not going for regular smear (Pap) tests’ may increase a woman’s chance of developing cervical cancer and far fewer recognised ‘infection with HPV’ as a risk factor (29%). We also found that women from non-white ethnic backgrounds were less aware that not going for regular screening could increase their risk of cervical cancer, compared with white British/Irish women.

These findings suggest that many women are not making informed choices about screening. All women included in our survey should have been sent educational leaflets about cervical screening, but as our previous research in bowel screening shows, women may not be reading these or remembering their content. Further public health action is needed to explore effective communication methods, including non-leaflet approaches, to ensure that all women are making an informed decision about cervical screening (non-)participation.

A ‘fuzzy’ distinction between different groups of cervical screening non-participant

LauraMarlow17 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).

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

LauraMarlow17 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

LauraMarlow21 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?

LauraMarlow19 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.

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

LauraMarlow3 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.