Removing the stigma around HPV
With the UK’s cervical screening programmes moving to testing samples for HPV, practice nurses will need to understand, and be able to explain, the benefits of this new test. They will also need to ensure they are prepared for an increase in the number of patients with questions and concerns about HPV
Around 80% of the population will be affected by Human Papilloma Virus (HPV) in their lifetime, yet awareness of this extremely common virus is worryingly low.
The latest research carried out by Jo’s Cervical Cancer Trust1 found that myths and misconceptions are widespread and shame and fear are commonly associated with the virus. Two fifths of the women questioned said they would be worried about what people would think of them if they were told they had HPV and over 40% would be concerned that their partner had been unfaithful.
Laura is two years cancer free following a cervical cancer diagnosis in 2016. She didn’t know what HPV was and, when she was told she had the virus, experienced a wide range of emotions, including feeling stigmatised when she told others that she had a cancer caused by HPV.
‘When I saw my letter that I had been diagnosed as being HPV positive I didn’t know what it was. I Googled it and it said it was an STI (sexually transmitted infection) so I automatically thought my partner had been cheating on me. I knew nothing about it; it felt dirty; it wasn’t nice. I didn’t realise it could lay dormant for so long and when I realised how common HPV was I was shocked. It’s so much more common than any virus I’ve heard of yet so few people knew about it. Everyone I spoke to had never heard of it and yet most of us are going to contract this.’
WHAT IS HPV?
HPV is a common virus that affects the skin and mucus membranes, including the lining of the mouth and throat, the cervix, the vagina, vulva and anus.2 There are over 200 types,3 with around 40 that affect the genital areas of men and women. The majority of these virus types are low-risk, with some linked to conditions such as genital warts. However, approximately 13 high-risk types are linked to the development of cancer.
High-risk HPV infection causes 5% of all cancers,4 and:
- 99.7% of cervical cancers5
- 90% of anal cancers4
- 70% of oropharyngeal cancers6
- 60% of vaginal cancers4
- 40% of penile and vulval cancers4
- 8% of mouth cancers.7
In 90% of cases, the immune system eliminates clinically insignificant HPV infection, but in some instances the virus remains in the body as a persistent infection and can cause cell changes that may need monitoring or treatment.8,9 We are still learning the exact mechanisms of HPV infection, but research suggests that it can stay inactive (dormant) in the body for many years without causing any problems, before becoming active again.10 It can therefore be impossible to know when the infection was contracted and from whom.
Even though HPV is extremely common, there is a significant lack of public knowledge about the virus. Jo’s Cervical Cancer Trust’s research found that one third of women hadn’t heard of it and over a third didn’t know it causes cervical cancer.1 For these women, being told they have HPV could be confusing and worrying, and nurses can have a crucial role in improving understanding of HPV and eliminating any anxiety they may have.
This research also highlighted a lack of understanding about how HPV is contracted, with over 1 in 8 incorrectly thinking it can be passed through needles or blood. Genital HPV can be passed through vaginal, anal and oral sex, including touching in the genital area and sharing sex toys, therefore while protected sex can reduce risk of infection, it doesn’t fully protect against the virus. A large percentage of the women in this research did not know HPV can be passed though unprotected sex, (vaginal 46%, anal 66% and oral 65%) and even more, 95%, were unaware that HPV can still be contracted through protected vaginal sex.
Through Jo’s Cervical Cancer Trust’s research it was found that only a fifth of respondents were aware that anyone who has been sexually active in their life is at risk of HPV. Over a quarter thought only anyone who is currently sexually active is at risk, and, of further concern, 42% said they would worry that their partner had been unfaithful if they were found to have the virus. When addressing myths around promiscuity or infidelity, explaining clearly how HPV is transmitted and how it can live in the body, sometimes at an undetectable level, is key.
HPV can be confusing, especially when discussing dormancy, and practice nurses must ensure they are ready to tackle misconceptions, confusion and topics including infidelity and promiscuity. If told they had HPV two thirds of women would worry they had cancer, a quarter would have no idea what it means, over half would wonder who gave it to them, half would be put off having sex with their partner and two thirds would worry it would impact them for the rest of their life
HPV affects the majority of the population and we must strive to normalise it to ensure people don’t feel ashamed if they are told they have the virus. With cervical screening attendance in decline, ensuring women are not further put off attending for fear of a HPV diagnosis is critical. Furthermore, by improving awareness of HPV we will ensure that women with cervical cancer do not feel afraid to discuss their diagnosis for fear of being judged.
HPV PRIMARY TESTING IN CERVICAL SCREENING
HPV primary testing is a new way of examining cervical screening samples and is a far more effective way of identifying women at greater risk of developing cervical cancer. Under the new programme being rolled out across the UK, samples collected during cervical screening are tested for high-risk HPV first and, if present, will then be sent to cytology to look for cell changes. This is the reverse of the current programme where cytology is used as the primary test.
The new process has been fully rolled out in Wales since September 2018 with England on track to fully convert by the end of 2019, and there are already some sites where HPV primary testing is being offered for all, or a proportion of samples. Scotland is on course to convert in early 2020 but Northern Ireland is yet to confirm an implementation date.
Around 5 million women are invited for cervical screening each year in the UK so that, with the roll-out of HPV primary testing, the term HPV may become more widely heard. Jo’s Cervical Cancer Trust’s research, however, has highlighted that high numbers of women would be scared (68%) or embarrassed (51%) if told they had the virus. Nurses must therefore be prepared to have discussions around what it means to have HPV. This includes its link to cancer and how it is contracted. More complex discussions around aspects of HPV such as dormancy should also be expected.
A LIFE COURSE APPROACH
HPV awareness can start from a young age. Girls – and in future, boys – are offered the HPV vaccination at secondary school providing protection against two high risk strains of HPV. Girls who take up their invitation afforded protection against 70% of cervical cancers.
For those having the vaccination in the surgery, a prime opportunity to discuss HPV is while the vaccination is being given. Explain its link to cancer and the importance of attending cervical screening when invited at 25. Research shows young women who have had the vaccine are often unaware they still have to attend cervical screening, so this is a prime opportunity to deliver this message.
Starting conversations from a young age can help reduce stigma around HPV and help normalise the virus. It can also prepare for the impact of a positive result, understanding how it happens and what it means. This can also include broader conversations around cervical health such as symptom awareness.
Practice nurses can also talk to patients about ways they can reduce their risk of persistent HPV infection. This includes smoking cessation advice. Smoking can weaken the immune system making it harder for the body to fight HPV infection, yet only a quarter of the women in Jo’s Cervical Cancer Trust’s research knew about the link between smoking and HPV infection.
While practising safe sex does not completely remove the risk of contracting HPV, condoms or dental dams leave less of the genital area uncovered therefore lowering risk. Discussions around safe sex is another way practice nurses can help inform patients.
MYTH BUSTING
Through having open conversations with patients, nurses can help tackle some of the stigma and myths that exist and increase understanding about HPV. This includes reinforcing the message that HPV is extremely common and, in most cases, will do no harm. Most people never even know they had the virus.
Almost one third of women think that HPV is an STI, and while it is usually sexually transmitted, unlike other STIs it cannot always be prevented and, unlike most STIs, cannot be treated with antibiotics.
FURTHER SUPPORT
To assist GPs and practice nurses in discussions about HPV, Jo’s Cervical Cancer Trust has a wide range of free resources including films, leaflets and online information. They are available to download and order for you to use with your patients. For patients requiring support then our free support services are also there for you. Find out more at www.jostrust.org.uk
REFERENCES
1. Jo’s Cervical Cancer Trust, 2018. https://www.jostrust.org.uk/node/1075301
2. Trottier H, et al, The epidemiology of genital human papillomavirus infection, Vaccine, 2006, DOI: 10.1016/j.vaccine.2005.09.054
3. Doorbar J, et al., Human papillomavirus molecular biology and disease association, Rev Med Virol 2015; DOI: 10.1002/rmv.1822
4. Plummer M, et al. Global burden of cancers attributable to infections in 2012: a synthetic analysis. Lancet Global Health 2016; DOI: https://doi.org/10.1016/S2214-109X(16)30143-7
5. Munoz N, et al. Epidemiologic classification of human papillomavirus types associated with cervical cancer. N Engl J Med 2003; DOI: 10.1056/NEJMoa021641
6. Schache A, et al. HPV-related oropharynx cancer in the united kingdom: an evolution in the understanding of disease etiology. Cancer Res 2016; DOI: 10.1158/0008-5472.CAN-16-0633
7. Cancer Research UK, Statistics by cancer type, 2017. http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type
8. Deligeoroglou E, Giannouli A, Athanasopoulos N, et al. HPV infection: Immunological aspects and their utility in future therapy. Infect Dis Obstet Gynecol 2013; ID:540850.
9. Graham SV. The human papillomavirus replication cycle, and its links to cancer progression: a comprehensive review. Clin Science 2017; DOI: 10.1042/CS20160786.
10. Waller J, et al. Making sense of information about HPV in cervical screening: a qualitative study. Br J Cancer 2005; DOI: 10.1038/sj.bjc.6602312
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