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.

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.

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.

Do you sometimes worry about how your life would change if you were diagnosed with cancer? Most people do. And perhaps unsurprisingly so, because research shows that if you are born after 1960, there’s a 50% chance that you’ll get cancer at some point during your life.*[1]

In a previous post, we described what it is that ordinary, healthy people worry about if they worry about being diagnosed with cancer, such as cancer treatment, how a diagnosis would affect loved ones, and death. But from the way we carried out that research, we couldn’t tell how common those worries are in the general population. We also couldn’t tell how these worries might influence engagement with cancer prevention and early diagnosis efforts, such as cancer screening. So in our latest two studies, we have looked at these questions.

In our first study, we examined how common twelve worries about cancer are.[2] We found that worries about the emotional and physical effects of a cancer diagnosis were much more common than worries about the social consequences. For example, two out of three people would be ‘quite’ or ‘extremely’ worried about the threat to life and emotional upset that a diagnosis would cause. One in two people would worry about surgery, radiotherapy, chemotherapy, and loss of control over life, while just under half would worry about financial problems or the effect of a cancer diagnosis on their social roles. One in every four people would be worried about effects on their identity, important relationships, gender role, and sexuality.

We also looked at whether some groups of people in the population worry more about these things than others. We found that women and those who are younger tend to worry more about all aspects of cancer. Interestingly, those from an ethnic minority background worried just as much about the physical and emotional impact of a cancer diagnosis as their White counterparts, but were more worried about the social consequences of a cancer diagnosis than those from White backgrounds. This might be because cancer tends to be more stigmatised or taboo in some ethnic minority communities,[3] and this is something we are currently doing more research on.

In our second study, we examined the association of these worries with uptake of screening for breast, cervical, and bowel cancer.[4] We found that men and women who worried about the emotional and physical consequences of a cancer diagnosis were more likely to take part in bowel cancer screening, while women who worried about the social implications of a cancer diagnosis were less likely to go for breast or cervical screening.

What can we conclude from this? First, being worried about cancer is an unpleasant emotion and may keep people from taking part in cancer screening or going to the doctor when they have a symptom that might be cancer. This could lead to delays in diagnosis and treatment, and worse outcomes. By better understanding what it is that people tend to worry about when it comes to cancer, we may be able to allay some of their worries, improve informed participation in screening, and encourage prompt help-seeking for symptoms.

* For those of you born before 1960, your chance of developing cancer during your lifetime is 1 in 3.

[1] Ahmad AS, Ormiston-Smith N, Sasieni PD. Trends in the lifetime risk of developing cancer in Great Britain: comparison of risk for those born from 1930 to 1960. British Journal of Cancer, 2015;112:943-7.
[2] Murphy PJ, Marlow LAV, Waller J, Vrinten C. What is it about a cancer diagnosis that would worry people? A population-based survey of adults in England. BMC Cancer, 2018;18:86.
[3] Marlow LA, Waller J, Wardle J. Barriers to cervical cancer screening among ethnic minority women: a qualitative study. J Fam Plan Reprod Health Care. 2015;41:248–54.
[4] Quaife SL, Waller J, von Wagner C, Vrinten C. Cancer worries and uptake of breast, cervical, and colorectal cancer screening: a population-based survey in England. Journal of Medical Screening, 2018. [Epub ahead of print]