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    Congratulations to Dr Jo Waller

    By Alice Forster, on 7 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

    By Alice Forster, on 26 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

    By Rachael Dodd, on 21 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

    By Rachael Dodd, on 7 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

    By Alice Forster, on 10 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

    By Alice Forster, on 6 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

    The HPV Vaccination: What’s preventing girls from being vaccinated?

    By Lauren Rockliffe, on 18 March 2015

    The number of girls receiving the Human Papillomavirus (HPV) vaccination is at an all-time high, according to a new report published this month by Public Health England; In the six years since the vaccine became routinely available over 2.3 million girls have received it, and in the last three years over 86% of girls offered the vaccine have received it.

    Despite these figures, previous research has shown that girls from Black and Asian ethnic minority backgrounds are far less likely to receive the vaccination than their White British counterparts.

    To find out why this might be happening, the EMPATHIC study has been set up; EMPATHIC is an interview study which aims to investigate parents’ opinions and experiences of HPV vaccination. The intention is to work out from these interviews what additional information or resources parents need to help them make an informed decision about the vaccination.

    What is HPV and why is the vaccination important?

    HPV is a common virus that affects the skin and moist areas that line the body (e.g. the mouth, vagina, anus) and is spread by skin to skin contact, including sexual contact. Around 8 out of 10 people will be infected with HPV at some point in their life but in most people the virus goes away on its own and doesn’t cause any symptoms. However, for some people the virus can cause cell changes which can increase the risk of some cancers.

    There are over 100 different types of HPV. Around 13 types can cause cancer and two types in particular (type 16 & 18) have been shown to cause most cases of cervical cancer (around 70% of cases). HPV is spread to the cervix through sexual contact and most infections are symptomless, so it is not obvious if someone carries the virus. Girls in the UK are offered vaccination against HPV to protect against these two types that cause cervical cancer.

    Girls are offered the HPV vaccination when they are in year 8 at school. It is offered to girls at this age because the vaccine is most effective if it is given before girls become sexually active. If their parents provide consent for them to have the vaccination they will have two injections spaced six months apart. The vaccination could prevent over 70% of cervical cancers. It’s therefore important for all girls to have the opportunity to get the vaccination.

    What does the EMPATHIC study involve?

    We are planning to conduct individual interviews with the parents of girls (who are in years 9 to 11 at school) from various backgrounds whose daughters have and haven’t had the HPV vaccine.

    We are working with schools and community groups in London who are helping us to contact parents that might want to be involved. We are also happy to for parents to get in touch with us if they think they might be right for the study.

    The interviews will last around 30 to 60 minutes. Parents will be asked to discuss their thoughts about the HPV vaccination and past experience of vaccination.

    What will happen after the interviews?

    After we’ve done all of the interviews (we’re aiming for 30 to 60) we will analyse the information and interpret the findings, which will hopefully result in some suggestions about what information or resources are needed to help parents make an informed decision about their daughter having the HPV vaccination.

    The next step will be to design some type of intervention based on what we find. This could be an information leaflet, text message reminders, or meetings held at the school, we don’t know yet; our decision will be based on our findings. Whatever intervention we develop will be tried out and we will evaluate how useful it is, to see whether it is something that could be used on a wider scale to help more parents make decisions about the vaccination.

    Get in touch!

    We’d like to hear your thoughts on the study. If you have any comments or are just interested in learning more, please contact Dr Alice Forster on 0203 108 3293 or at alice.forster@ucl.ac.uk.

    Article Reference: Public Health England (2015) Human Papillomavirus (HPV) Vaccine Coverage in England 2008/09 to 2013/14 (Report no. 2014797). London: Public Health England.

    Get involved in research: parents helping us to reduce inequalities in cancer

    By Alice Forster, on 15 January 2015

    Vaccination is one of the best methods we have for preventing the spread of infection diseases. Thanks to vaccination, the last human case of smallpox was seen in 1977. Vaccination against polio has also made a lot of progress and the disease has almost been wiped out. Earlier last year, polio was only seen spreading between people in Afghanistan, Nigeria and Pakistan.

    In 2006 a vaccine protecting against the human papillomavirus (HPV) was licensed. HPV is very common and in most people causes no problems. However, some people are not able to get rid of the infection. Lasting infection with HPV can cause cervical cells to change, and, if they are not treated, can lead to cervical cancer. Unsurprisingly, cancer researchers were excited when the vaccination was developed against the 2 types of HPV that are involved in most cases of cervical cancer. In 2008, vaccination against HPV was recommended by the UK Government for 12 and 13 year old girls in the UK. The vaccine currently being used in the UK childhood immunisation schedule also protects against anogenital warts.

    Information from Public Health England tells us that most girls are getting the vaccine. However, research suggests that girls from Black and Asian ethnic minority backgrounds are less likely to get the vaccine than girls from White ethnic backgrounds. In the UK, children under the age of 16 need permission from their parents to receive vaccinations, so for us to be able to understand why girls from Black and Asian ethnic minority backgrounds aren’t getting the HPV vaccine, we need to speak to their parents. I have recently been given a Cancer Research UK – BUPA Cancer Prevention Fellowship to do three studies to look into this some more.

    First, we will do an interview study with parents to work out why girls from ethnic minority backgrounds are less likely to get the vaccine. In the second study, we will develop tools to help parents make informed decisions about HPV vaccination. Finally, we will do a feasibility study to see whether a future randomised controlled trial is possible.

    We want to make sure that the research we do it meaningful to the people we are studying. We would therefore like to speak to parents from Black and Asian minority ethnic backgrounds to help plan this research.

    Parents can help us:
    • Make sure that we plan studies that people would be happy to take part in;
    • Work out how best to ask people to take part;
    • Work out what the research findings mean;
    • Tell other people about the research findings.
    What will parents be asked to do?
    • We would need parents to attend a group meeting to discuss the project.
    • There will be two more meetings over the next three years that we hope they can join.
    • Parents do not need any specialist knowledge – we will give them all the support they need.
    What is in it for parents?
    • We will give parents £25 as a thank you for their time.
    • We will also pay for any travel costs of getting to the meeting.
    • The meeting will last one hour and refreshments will be provided.
    • The research team are happy to give talks to any community groups/schools as an additional thank you parents for their involvement.
    We hope that parents will find being involved a fulfilling experience. The first meeting will be in late January 2015, and will be held at a time and place that is convenient to the parents involved. Eight community members will attend the meeting.

    How can I get involved?
    Please get in touch if you would like any more information or if you know of someone who might want to be involved. Dr Alice Forster – 0203 108 3293 – alice.forster@ucl.ac.uk

    The role of HPV in head and neck cancer: It’s time to talk.

    By Rachael Dodd, on 5 November 2014

    Most well-known for its link with cervical cancer, human papillomavirus (HPV) has been linked to a number of other cancers including some cancers of the head and neck.  The number of HPV-related head and neck cancers diagnosed in the UK has doubled in recent years so health professionals in this field are finding themselves having to talk to their patients about HPV.
    Health professionals have an ethical obligation to ensure accuracy and transparency when explaining to patients that their cancer has been caused by HPV. But because HPV is sexually transmitted, discussing it could be a potential challenge for health professionals with little experience of discussing sex with their patients. In order to understand the experiences and challenges of talking to head and neck cancer patients about HPV, we interviewed fifteen health professionals (surgeons, oncologists, specialist nurses and allied health professionals) working in the field.
    Most of the health professionals we interviewed did talk to their patients about HPV, but there were mixed views about the benefits of this. Some felt it was useful for patients to know the cause of their cancer, particularly because HPV-related head and neck cancer has a better prognosis than the more ‘traditional’ tobacco and alcohol-related cancers. Others felt that as patients’ HPV status would not affect their treatment, such discussions were unnecessary.
    Health professionals discussed how HPV-related head and neck cancer patients can have different rehabilitation needs to those with head and neck cancer that’s caused by alcohol and tobacco because they tend to be younger and in better health. For example, one speech and language therapist said: ‘we’ve got a longer period of survivorship for younger people who are still actively employed and so their functional rehabilitation becomes a bigger issue’. The impact that an HPV-related diagnosis could have on relationships was also considered important.
    Participants identified some key messages about HPV that they felt were important to include in their discussions with patients. Explaining to patients that HPV is very common and linked with normal sexual behaviour helped to normalise the infection. Drawing parallels with cervical cancer and mentioning the HPV vaccination had also been found to be helpful.
    The range of experiences discussed suggests a need for clinical guidance to ensure that patients are receiving consistent messages. In line with a previous study of dentists in the United States, most of the health professionals we interviewed felt that additional training could help them improve their knowledge about HPV and their communication with patients. Further research is needed with patients to explore what being diagnosed with HPV-related head and neck cancer means for them.

    Article link:
    Dodd R.H; Marlow L. and Waller J. Discussing a diagnosis of human papillomavirus oropharyngeal cancer with patients: a qualitative study of health professionals Head and Neck
    http://onlinelibrary.wiley.com/doi/10.1002/hed.23916/pdf

    When life gets in the way

    By Laura Marlow, on 25 October 2011

    The falling cervical screening rates in younger women could be explained by their hectic lifestyles

    It is a familiar story, every day you add a few more things on your to-do list, book a haircut; pay that cheque in; send a birthday card to your best friend.  In theory you should tick them off in order, first on first done or even better prioritise, ticking off the most important jobs first.  In reality the list grows and grows and although you tick off a few jobs each week (if you don’t post that birthday card before you friend’s birthday, it won’t be worth posting it), there are a handful of old-timers that remain week after week, month after month.  And going for a smear test might be one of these.

    In our first blog we talked about how our research suggests the more some people think about the nitty gritty of doing a screening test, the less appealing it is to them.  Another reason for not doing screening could be that it simply drops to the bottom of your list, because life gets in the way.  Our recent study suggests that this could be one reason why fewer young women are going for cervical screening in England.  Since 1999, there’s been a drop of 12% in attendance for smear tests in 25-29 year olds, and we’ve been trying to understand why.

    We interviewed and ran focus groups with 46 women who weren’t up to date with their smear tests, making sure we included young and older women so we could compare them.  The women discussed their reasons for not going for screening.  There seemed to be two distinct patterns of non-attendance.  Some of the women described how they had actively decided not to be screened.  These women either felt they were not at risk of cervical cancer or had weighed up the risks and benefits of screening and decided not to attend.  The second group of women described how although they intended to go for screening, they did not get round to it.  A variety of reasons were given, such as finding it difficult to make appointments to fit in with work commitments or childcare arrangements and feeling that cervical screening was at the bottom of their list: “I’ve got to have blood tests, I’ve got to go to the dentist, I’ve got to get my hair cut, so what’s low in priority, and a cervical smear test would be right down there I think”.  Interestingly, it seemed to be the older women who were making informed decisions not to attend, while the younger women just didn’t get round to going.

    The findings complement a survey study that we published in 2009.  The study included a population-based sample of 580 women aged 26-64 years.  Women answered questions about their cervical screening uptake and selected which statements they agreed with from a list of possible barriers to attending screening.  While the most common barrier was embarrassment, this was chosen equally by women who did and did not attend screening regularly.  The second most common barrier was: “I intend to go… but don’t always get round to it”. This barrier was chosen more by women in the younger age group (26-34 years: 25%) than the older age group (55-64 years: 8%) and alongside “it is difficult to get an appointment” and “I do not trust the smear test” was associated with being overdue for screening.

    Our findings have some interesting implications for how cancer screening is offered to younger women.  Using prompts (e.g. advertisements or text reminders) could be a useful way of overcoming the gap between intention and behaviour, reminding women that ‘Go for a smear’ is still on their to-do list.  Making screening more convenient (e.g. available at locations near work places or offering extended clinic hours) could also make it easier for women to fit in going for a smear test.  It can then be marked job done.

     

    References:

    Waller J, Jackowska M, Marlow L, Wardle J. Exploring age differences in reasons for non-attendance for cervical screening: a qualitative study. BJOG, in press. DOI: 10.1111/j.1471-0528.2011.03030.x

    Waller J, Bartoszek M, Marlow L, Wardle J. (2009) Barriers to cervical cancer screening attendance in England: a population-based survey. Journal of Medical Screening, 16:199-204. DOI: 10.1258/jms.2009.009073

     

    Laura (l.marlow@ucl.ac.uk)