New research by Jo’s Cervical Cancer Trust shows that only half of those who have human Papillomavirus (HPV) on their cervical screening results know what it means. The number of service users coming to the charity has doubled over the last few years, in line with HPV primary screening being introduced through the UK. Users regularly report feeling confused, ashamed and frightened.
Cervical cancer is rare with 3,200 diagnoses every year while HPV, the cause of the disease, is extremely common affecting 8 in 10 in their lifetime. The body will normally clear the infection without it causing harm, however lack of awareness of the virus means eight out of ten women who are told they have HPV fears that they have cancer.
The charity surveyed members of its community who have had HPV and found more than 70% reported feeling anxious and over 40% felt ashamed.
Cervical screening in England, Scotland and Wales uses HPV primary screening, which is a more sensitive and accurate test than the previously used testing method of looking for cell changes. (Northern Ireland is yet to switch to HPV screening and still uses cytology as the first test.) HPV screening helps find those at higher risk of cervical cancer earlier. As a result more women and people with a cervix are learning they have the virus.
The charity warns that unless HPV stigma and confusion is tackled, years of work to remove stigma in cervical screening risks being undone and thousands needlessly experience these feelings.
HPV has been the most popular topic on the charity's expert clarification service for the last two years and 2nd most popular topic on their Helpline. The charity’s support services have also seen an increase in health anxiety relating to HPV.
Misconceptions around the nature of HPV, and its relation to sexually transmitted infections, can lead to concerns around promiscuity, infidelity and even relationship breakdown which Jo’s Cervical Cancer Trust regularly hears through its services. Almost 4 in 10 (38%) reported being worried about telling their partner and 17% worried that a partner had cheated. Half of those surveyed were worried about sex and intimacy after learning they have HPV.
Focus groups and interviews carried out by the charity found that a HPV diagnosis can cause those affected to resort to drastic lifestyle changes to try to get rid of the virus, such as changing eating habits, cutting out alcohol, buying expensive supplements which are not proven to clear HPV, and avoiding sex.
There is no HPV test for men, meaning that the emotional strain of a HPV diagnosis can fall to women. The charity wants to see an increase in education about HPV from an earlier age to reduce the impact across the life course. During Cervical Screening Awareness Week (14-20 June) it is encouraging conversation and sharing experiences about the virus in order to reduce isolation and anxiety.
For those living with and beyond cervical cancer, the HPV diagnosis often prevails.
Commenting on the survey results, Sam Dixon, Chief Executive of Jo’s Cervical Cancer Trust said: ‘Increasing cervical screening attendance remains vital but we must not overlook the support that is often required after the test. HPV is so common and yet those affected tell us they often feel isolated. We regularly hear about anxiety, worry and even relationship break downs because of those three letters. Increasing HPV understanding must go hand in hand with cervical screening awareness so that everyone understands their results, and this very normal thing becomes normalised.’
Catrina Donegan, a general practice nurse in London, added: ‘Practice nurses can play a key role in reducing myths, stigma and helping patients to understand more about HPV. They are in a prime position to talk to them about how common it is, how it is passed on by skin-to-skin contact and that by detecting it we can monitor, investigate and treat associated cell changes if needed.
‘Asking open-ended questions when talking to the patient is a great opportunity to explore patients’ own knowledge and feelings about HPV and gives them the opportunity to ask their own questions.
‘Reassurance and phraseology is key when talking about HPV, and things that seem simple, such as not referring to HPV as a STI or using the term HPV-positive or negative, instead using HPV detected or not detected can make a huge difference to how women think about it and themselves. Remember that there is lots of support out there if patients want further information and/or support, such as Jo’s Cervical Cancer Trust, who can provide knowledgeable, friendly and confidential help.’