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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.

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.

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.

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.

A new jab to prevent cancer

AliceForster26 May 2016

What is HPV and how is it linked to cancer?

Around 5% of all cancers worldwide are caused by the human papillomavirus (“papi-lo-ma-virus”) or HPV. More and more people are aware that HPV causes cancer of the cervix (the neck of the womb) in women, but HPV can also cause cancers of the penis, anus, vagina, vulva and mouth and throat. The virus is spread by skin to skin contact, including sexual contact. There are many different types of HPV. Some types cause cancer, while others cause warts that people get on their hands, feet or genitals and these types do not cause cancer. The types of HPV that cause cancer are so common that HPV is the most frequent sexually transmitted infection in the UK. In most people the cancer causing types of HPV cause no problems and the virus goes away on its own. However, some people do not get rid of the infection. If the infection stays for many years it can turn into cancer.

HPV vaccines

In the late 1990s and early 2000s two vaccines were developed that protect against the two types of HPV that cause around 80% of cervical cancers. Girls who are aged 12-13 years old in Year 8 at school are now offered one of these vaccines as part of the childhood immunisation programme. The vaccine that is used as part of the UK programme also protects against two types of HPV that cause genital warts. Recently, a third HPV vaccine called the nonavalent or 9-valent vaccine has been licenced for use in the UK, as well as in the USA and elsewhere in Europe.

The new 9-valent vaccine

The 9-valent vaccine, as the name suggests, protects against 9 types of HPV – that means protection against an extra 5 HPV types compared with the other two vaccines. These 9 HPV types cause up to 90% of cervical cancers, so an additional 10 in every 100 cervical cancers could be prevented.

Where does behavioural science fit in?

The invention of these vaccines is a fantastic step forward towards wiping out cervical cancer, but this can only happen if people get the vaccine and we know that many people are not doing so for a variety of reasons. The benefits of the HPV vaccine will be greatest if most people get the vaccine, however as with all healthcare decisions, the decision to get the HPV vaccine should be an individual informed choice. In our new paper, we look at how we can use our understanding of why people don’t get vaccines, specifically the HPV vaccine, to try to increase uptake of the 9-valent vaccine.

Reason 1: Will the 9-valent vaccine overload the immune system?

Some parents worry that vaccines overload the immune system and others worry that particular ingredients make vaccines risky for their children. Parents consider combination vaccines to be risky for both of these reasons as they are seen as containing a greater number of ingredients. The 9-valent vaccine is not a combination vaccine, but it protects against 9 types of HPV compared to 2 or 4 types of HPV with older HPV vaccines and might be seen as more dangerous. However, parents should be reassured that the 9-valent vaccine is safe and has been licensed for use in the UK, USA and the rest of Europe. There is also no evidence that vaccines overload the immune system.

Reason 2: ‘I’ll wait to decide until there’s more evidence that it will protect my daughter in her twenties’

Many parents have said that rather than giving their 12 or 13 year old daughter the vaccine (as recommended) they would rather wait until their daughter became sexually active so that she may be protected when she ‘really needs it’. However, the HPV vaccine is likely to give protection against HPV for decades and works better if it is given at a younger age. Parents may also find it difficult to get the vaccine for their daughter outside of the routine immunisation programme. Parents should be reassured that 12 to 13 is the right age for their daughter to get the 9-valent vaccine.

Reason 3: ‘It’s so new, the government can’t know about the long-term side effects’

Because the vaccine is relatively new, some parents say that they are worried that the vaccine has not been monitored for long enough. However, vaccines go through many years of testing before they become available to the public. There is no evidence that the HPV vaccines are unsafe or cause side-effects other than temporary mild/moderate pain, swelling, redness and itching.

What else can be done to increase uptake of the 9-valent vaccine?

Scientists have looked at all of the published research studies that have tried to improve uptake of HPV vaccines. These show that uptake can be improved by doing things like sending reminders to parents and running school-based immunisation programmes like we have in the UK. In the USA, where the vaccine is given in a clinic setting, parents are most likely to get their daughter vaccinated if a doctor recommends that she has it. The language that the doctor uses to make that recommendation is also important.

 

The 9-valent HPV vaccine is a fantastic opportunity to prevent even more cancers that are caused by HPV. Parents can be reassured that the HPV vaccines are safe and will provide protection for their children against a number of cancers for many many years.

Reviewing what we know: the psychological impact of HPV and oral cancer

RachaelDodd21 March 2016

Human papillomavirus, or HPV as it’s more commonly known, is an infection that most sexually active people will get in their lifetime. We know that the high-risk types of HPV (e.g. HPV-16 and HPV-18) are often sexually transmitted and in some cases, albeit very few, it can lead to cancer if our bodies don’t get rid of it. It’s probably most well known as the cause of cervical cancer, as the HPV vaccination was introduced in 2008 and is available to all girls aged 12-13. But it has also been shown to cause other cancers, such as oral cancer, penile cancer and anal cancer.

When HPV was increasingly found to be the cause of cervical cancer, researchers looked into the psychological impact this could have on women being given this information. Research carried out with women taking part in HPV testing at cervical cancer screening has shown that the sexually transmitted nature of HPV can lead to women feeling stigma, anxiety, concern about their relationships and worry about telling others about their test result. Some women also reported a reduction in sexual enjoyment and frequency of sex. Because of the additional challenges faced by women with cervical HPV, people now recognise a need for some guidance on how best to discuss HPV with oral cancer patients.

Patients with HPV-related oral cancer are typically younger than those whose oral cancer has been caused by tobacco or alcohol. They tend to be white, male, married, educated and employed. The risk of getting a HPV-related oral cancer is higher if individuals have had a greater lifetime number of sexual and oral sex partners, due to greater exposure to HPV.

Unsurprisingly, research shows that a diagnosis of head and neck cancer causes psychological distress. Telling patients that they also have HPV could make them worry even more. We wanted to see what studies have been done in this area and what they have found.

We searched all the available literature to look at the psychological impact of being diagnosed with HPV-related oral cancer. In essence, there wasn’t much research out there. Ten research papers had looked at the psychological impact of being diagnosed with an HPV-related oral cancer. Seven of these measured quality of life (a patient’s ability to enjoy normal life activities) and they had varying results. Some research studies found that patients with HPV-related oral cancer had better quality of life than those diagnosed due to tobacco or alcohol, or that there was no difference between the two groups of patients. In one study which interviewed survivors, some patients felt stigma or shame associated with their diagnosis, because of the sexually transmitted nature of HPV.

We also looked at what different groups of people know about HPV and oral cancer, which varied considerably. As you would expect, knowledge was higher among medical professionals than members of the public. Knowledge was also higher among students who were studying medicine or dentistry than students who were not studying these subjects.

So far, there haven’t been many studies looking at the psychosocial impact of a diagnosis of HPV-related oral cancer and many people in the general public do not know about the link between HPV and oral cancer. The research studies looking at the psychological impact of HPV-related oral cancer, looked at this in patients, but this has led to further research being conducted with health professionals, patients and their partners. This research has explored their experiences of diagnosing/being diagnosed with HPV-related oral cancer, as well as the psychological impact of a diagnosis of HPV-related oral cancer.

Article link:

Dodd RH, Waller J, Marlow LAV. Human Papillomavirus and Head and Neck Cancer: Psychosocial Impact in Patients and Knowledge of the Link – A Systematic Review. Clinical Oncology 2016. http://dx.doi.org/10.1016/j.clon.2016.02.012

Making the headlines: HPV and oral cancer

RachaelDodd7 March 2016

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

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

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

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

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

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

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

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

Article link:

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

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

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.

Screening_3_IMG_5571

Why some girls don’t get the HPV vaccine and why others don’t get all doses

AliceForster6 January 2016

Girls in year 8 in the UK (aged 12 and 13) are offered a vaccine that protects against human papillomavirus or HPV. While HPV is very common, in some people it can cause cancers of the cervix, mouth and throat, vulva, vagina, penis and anus. The vaccine protecting against HPV was originally given in three doses when the immunisation programme first started, however it is now given in two doses over at least six months. Most girls in England get the HPV vaccine (around 87% of them), but as we’ve written before, uptake of the vaccine is lower among girls from Black and Asian Minority Ethnic backgrounds. We also know that more girls get the first dose of the vaccine than complete the series. This is concerning as the vaccine works best if girls get all doses. However, we do not yet properly understand why some girls are not getting the vaccine and why some girls do not complete the series. With this information we can identify targets for information campaigns or wider policy changes that can help establish and maintain high coverage.

In a study that was published at the end of last year, funded by Cancer Research UK, we spoke to girls who had been offered the HPV vaccine as part of the routine immunisation programme to find out why some girls had not got any doses of the HPV vaccine and why some had started, but not completed the series. The girls were recruited from 13 schools in London as part of a larger questionnaire study (some of the findings have been reported already here and here). Girls were asked if they had received the HPV vaccine and if they had, they were also asked how many doses they had received. We grouped girls as being unvaccinated (they had received no doses) or under-vaccinated (they had started the series, but had not finished it). They were then asked to explain why they were unvaccinated or under-vaccinated, and we categorised their responses using content analysis.

There were 259 girls who were either unvaccinated (202 girls) or under-vaccinated (57 girls) who also gave us a reason to explain why this was the case. These girls came from a diverse range of ethnic backgrounds; around 31% were from White backgrounds, 29% from Black backgrounds and 20% from Asian backgrounds (around 20% were from an ethnic background other than White, Black or Asian, which were mainly mixed backgrounds, and 2% did not tell us their ethnicity).

Reasons for being unvaccinated

The most common reason that girls gave to explain why they had not had the HPV vaccine was that they did not have consent from their parents (41% of girls said this).

“My mother didn’t want me to have it, even though I did” (Black Caribbean; self-reported ethnicity)

Other common reasons included concerns about safety (reported by 25% of girls) and believing that they did not need the vaccine (19% said this).

“My mum didn’t trust the vaccine because it was new” (Turkish).

“Because I’m not going to have sex before marriage” (Pakistani)

Reasons for being under-vaccinated

Administrative problems were the most common reason that girls gave to explain why they had not finished the vaccine series (51% gave this as a reason), including being absent from school on the day of vaccination and some did not know that multiple doses were needed.

“I never got round to having the 3rd one [dose] because I switched schools” (Indian).

Health reasons, including girls believing that they had conditions which meant they should not complete the series (9%) and procedural issues, including fear of needles (5%), were also reported.

“I hate needles” (Mixed White / Black Caribbean)

“After the first vaccine I started to feel lighted headed” (Mixed White / Black Caribbean)

Reasons given by girls from different ethnic backgrounds

Compared to girls from other ethnic backgrounds, girls from White backgrounds were most likely to say that they were concerned about safety. Girls from Black and Asian backgrounds were most likely to say that they did not think that they needed the vaccine.

Summary

In this study we tried to find out the reasons why girls from a diverse range of ethnic backgrounds have not had the HPV vaccine or have not completed the series. Among girls who had not had the vaccine at all, concerns about the safety of the vaccine and believing that they did not need the vaccine were commonly reported. Girls who had not finished series said that they were absent from school when the vaccine was offered, did not know that multiple doses were needed and felt they had health issues that meant they should not have all doses. There was some suggestion that girls from White backgrounds were most commonly concerned about vaccine safety and that girls from Asian and Black backgrounds were most likely to believe that they did not need the vaccine. These findings can be used to tailor interventions to increase informed participation in the HPV vaccination programme among girls who are currently unvaccinated or do not complete the series. This will be the next step in one of our current programmes of work funded by Cancer Research UK.

References

Forster, A.S., Waller, J., Bowyer, H., Marlow, L. Girls’ explanations for being unvaccinated or under vaccinated against human papillomavirus: a content analysis of survey response. BMC Public Health. 2015;15:1278. doi 10.1186/s12889-015-2657-6