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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.

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.

Congratulations to Dr Jo Waller

AliceForster7 November 2016

Alice Forster and Laura Marlow

Today at the NCRI Cancer Conference in Liverpool, the inaugural Jane Wardle prize was awarded to our very own Dr Jo Waller to recognise her world-leading contribution in cervical cancer prevention. The prize was set up by Cancer Research UK in memory of Professor Jane Wardle who died last year. Jo has been at the Health Behaviour Research Centre for 15 years and was herself mentored by Jane Wardle. In this blog we highlight some of Jo’s key research in cervical cancer prevention during this time.

 

In 2005, Jo completed a PhD exploring psychosocial issues surrounding the viral aetiology of cervical cancer. These early studies explored the emotional and social consequences of a HPV diagnosis and how women make sense of a HPV positive result at cervical screening. The findings highlighted extremely low awareness of HPV and poor understanding about how cervical cancer develops. This work also showed the importance of providing good information to ensure minimal anxiety when receiving a HPV positive result at screening and to avoid stigmatising cervical cancer.

 

Jo and her colleagues went on to explore psychosocial issues surrounding HPV vaccination before and after its introduction in 2008. This research helped identify the most appropriate age for the vaccine and contributed to the content of the information materials provided. In addition, this work offered reassurance that vaccination against a sexually transmitted infection (the HPV vaccine) did not result in changes to girls’ sexual behaviour as some media reports had suggested. Jo’s work has also explored why certain sub-groups of the population, such as young women and ethnic minority women are less likely to participate in cervical screening.

 

In 2014, Jo was awarded a prestigious Cancer Research UK Career Development Fellowship to continue her research in cervical cancer prevention. Jo now formally manages a team of researchers and her current research activities include understanding non-participation in cervical cancer screening and HPV vaccination, developing interventions to improve uptake of these cervical cancer control interventions, and evaluating the psychological impact of primary HPV testing within cervical screening.

 

Jo has also been involved in numerous other bodies of work over the last 10 years including development of the Cancer Awareness Measure and studies exploring informed choice about screening. She is also an informal mentor to many students and colleagues. We are all very proud of Jo’s achievement today. Well done Jo!

 

You can read more about our current work in cervical cancer prevention on our website.

Remembering Professor Jane Wardle – Part 3 – Psychological and behavioural implications of the link between HPV and cancer

AliceForster10 January 2016

This third post in our series on the contribution that Professor Jane Wardle made to cancer behavioural science discusses the human papillomavirus (HPV or cervical cancer) vaccine and HPV testing written by Dr Alice Forster and Dr Jo Waller.

In 1976, Harald zur Hausen discovered that human papillomavirus (HPV) plays an essential causal role in the development of cervical cancer (he later won the Nobel prize in Physiology or Medicine in 2008 for this work). HPV can also cause cancers of the vagina, vulva, penis, anus and mouth and throat and is transmitted by skin to skin contact (usually sexual contact with cervical cancer). zur Hausen’s discovery made possible the development of technology to test for HPV, and this test is now used in the NHS cervical screening programme. Jane and colleagues realised that testing for a sexually transmitted infection in the cancer screening context might cause some women confusion and anxiety. They conducted work exploring the psychological impact of women testing positive for HPV, finding raised concerns about fidelity and blame and increased anxiety and distress. The work had implications for the kind of information women are given about HPV when they take part in screening.

Another implication of zur Hausen’s discovery was the development in the late 1990s and early 2000s of vaccines that protect against the two types of HPV that cause most cervical cancers. Jane recognised, based on her work on HPV testing, that vaccinating young girls against HPV, a sexually transmitted infection, could be controversial for some and sought to understand the potential acceptability of HPV vaccines.

One of Jane’s key studies in this area was conducted in 2005 before the HPV vaccine was licensed. The study aimed to explore mothers’ responses to information about the HPV vaccine. Jane and colleagues conducted a focus group study with 24 mothers of 8 to 14 year old daughters. The study found that most mothers were keen to prevent their daughters from developing cervical cancer, but they also had reservations about the safety and possible side-effects of the vaccine. Many mothers wanted to talk to their daughter about the vaccine and felt that this would be difficult if the vaccine was given to young children. Some felt that girls younger than 10 or 11 would not have had much, if any sex education and so discussing a sexually transmitted infection with them would be tricky. Others did not want to think about their daughter being sexually active and for this reason felt that they could not consider giving the vaccine to a 9 year old.

“They’re innocent at 9. They don’t do things like that.”

 “It’s not thinkable is it, your 9-year-old doing anything like that?”

Parents also expressed fear that HPV vaccination might be seen by girls as consent to be sexually active or fear that girls would misinterpret HPV vaccination as protection against sexually transmitted infections in general. Earlier work conducted by Jane and colleagues suggested that around a quarter of mothers and girls themselves believed that girls would be more likely to have sex or unprotected sex following HPV vaccination. However, reassuringly, in the first longitudinal study to look at whether girls’ sexual behaviour changed following HPV vaccination, we were able to show that vaccinated girls were no more likely to have become sexually active after vaccination (compared to girls who did not get the vaccine), to have increased their number of sexual partners or to have changed how consistently they used condoms.

At the time of Jane’s initial research in this area, she and her team were one of only a handful of research groups internationally who were investigating the behavioural side of HPV vaccination and testing. Today, researchers across the world are applying behavioural science to understand how to maximise uptake of HPV vaccination in their own countries and to minimise the negative psychological consequences, and maximise the acceptability, of HPV testing. The work in our group continues, with projects aimed at understanding ethnic differences in uptake of HPV vaccination, exploring the psychological impact of primary HPV testing, and examining psychological responses to an HPV diagnosis in patients with head and neck cancer.

Jane’s work paved the way for the introduction of the HPV vaccine in the UK in 2008, by helping immunisation programme coordinators anticipate its acceptability among parents. Jane’s finding that the HPV vaccine might not be acceptable to mothers if it were offered to girls younger than 11 informed the UK government’s decision to recommend the vaccine for 12 and 13 year olds. Today, almost 90% of 12 and 13 year old girls in England get the HPV vaccine, and with it protection against HPV-related cancers.

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