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Just 12% of women know how HPV testing is used in cervical screening

Sophie Wedekind
by Sophie Wedekind | News

25 October 2023

7 comments 7 comments

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Scientist preparing microscope slides with liquid based cytology method for pap smear test. Cervical cancer concept.
Preparing cervical cells in microscope from cervical screening. Shutterstock: Anamaria Mejia

A new study funded by Cancer Research UK has revealed a gap in many women’s understanding of HPV (human papillomavirus) and its role in cervical screening (previously known as smear tests). 

In the UK, people are encouraged to attend their cervical screening appointment, which aims to prevent cervical cancer. But a survey conducted by researchers at King’s College London showed that just 12% of women understood the role of HPV testing within the screening process. It also found only 14% of participants mentioned HPV as a cancer risk factor.

What is HPV?

You may have heard of HPV before. It’s a virus that can cause cervical cancer in its high-risk form, as well as some other cancer types.

Even though HPV infection itself is common, it’s very rare for it to lead to cancer. Most people will have an HPV infection at some point in their life, but only a small percentage of people will develop a cancer linked to HPV. 

Cervical screening is for people without symptoms, and aims to prevent cervical cancer from developing. It is offered to most women, some trans men and non-binary people with a cervix, aged 25 to 64. HPV primary testing was introduced into England’s cervical screening programme in 2019, aiming to pick up high-risk strains of HPV with the potential to cause cancer.

That hasn’t resulted in a difference to the screening appointment itself – it just means that, when the cell sample gets to the lab, it’s first analysed for HPV. Then, if HPV is found, the sample will be further analysed to check for any cell changes that could lead to cancer if left untreated.  

Mind the gap

Attending cervical screening is a personal choice, but the survey found a correlation between cervical screening attendance and an understanding of HPV. The researchers believe this could show the impact of sharing health information during appointments and that more work is needed to reach people who aren’t currently able to make an informed choice. 

The latest figures from NHS England (2021-2022) for cervical screening show that almost a third (30%) of eligible people did not attend their cervical screening appointment when they were last invited.

“While positive strides have been made to increase awareness of HPV, our research reveals major gaps in women’s understanding of current approaches to cervical screening,” says Professor Jo Waller, lead of the study and now Professor of Cancer Behavioural Science at Queen Mary University of London. 

“Improving awareness can help to reduce feelings of uncertainty and confusion about screening results. It will also help people understand the reasoning behind any future updates to the screening programme, such as HPV self-sampling and changes to intervals between screening appointments.”  

Screening saves lives 

Cancer Research UK has been at the heart of decades of pioneering research into understanding and preventing cervical cancer. The charity’s scientists proved the link between HPV and cervical cancer more than 20 years ago. 

Thanks to these scientific developments, including the HPV vaccine and screening, cervical cancer rates have fallen by over a quarter since the early 1990s. But it’s still important to remember that there are around 3,300 people who receive cervical cancer diagnosis every year in the UK (2017-2019). 

“The cervical screening programme is estimated to save at least 2,000 lives from cervical cancer every year in the UK and this number is likely to increase thanks to HPV testing,” says Dr Julie Sharp, Cancer Research UK’s head of health and patient information. “Everyone should have equal access to screening, but barriers to participation can often lead to inequalities in diagnosis and treatment. If we’re to eliminate these inequalities, we need more research like this.”  

“It’s vital that the UK Government continues to work with individuals, communities and services to ensure that accurate information about HPV reaches those who need it.”

Gem’s story

Gem was 28 years old when she received her cancer diagnosis after attending her cervical screening. 

“I was young and healthy and hadn’t experienced any symptoms, so to be told I had cervical cancer took me completely by surprise. My mum accompanied me to the appointment, and we just stared at each other in shocked silence. It was a lot to take in.”

Because her cancer was caught early, she had surgery a month later and the treatment was successful.

Gem in 2019
Gem in 2019

Gem is now free from cancer, but still attends regular screening and is an advocate for cervical screening after it led to her cancer diagnosis.   

“Screening takes just minutes, and it can save your life. Had I left it a few more months to go to my appointment, I could have been facing a very different situation.

“I want to highlight the importance of early detection in all cancers, but specifically in cervical cancer as smear tests are so readily available. It’s great to see HPV testing included in cervical screening, and I hope that by raising awareness of its impact even more people will be encouraged to attend their appointments.” 

    Comments

  • contact: (Robins onbu cler (gmail (com)
    14 March 2024

    Wooow!!! I am Hsv free……

  • Ann Trollope
    29 January 2024

    I had pre-cancer cells & had laser treatment in 1982 after giving birth to my son. Moving on to 2016 when I was successfully treated for HPV-related cancer at the base of my tongue. The side effects of the treatment are ongoing! I feel this aspect of HPV cancer is not as widely publicised as it should be – it affects men too!

  • Jessica
    24 January 2024

    I just wanted to echo Catherine’s comment from the 4th Jan. I have a huge concern that screening now only looks for HPV rather than testing for abnormal cells. Surely we should always be testing for abnormal cells in all screening just to be sure that there are no changes occurring, whether or not HPV is present. It doesn’t make sense that when there is a test that can pick up early cell changes, we stop doing that and only look for HPV. I say this as someone who was diagnosed with stage 1A back in 2017 and this was picked up because my smear picked up CIN3. I would much rather my test look for any abnormal cell changes rather than just HPV

  • Janis Hamilton
    23 January 2024

    I am 61 and am up to date with my screening. I have always tested negative to date . Is it the case that if I am in a stable relationship with one partner, that I no longer need to be screened? As I have not had children I find the sampling process quite painful.

  • reply
    Jacob Smith
    25 January 2024

    Hi Janis,

    Thank you for your question.

    Cancer screening is offered at ages when the benefits are biggest and the harms are smallest. If you are within the eligible screening age, it’s important to consider taking part in cervical screening, even if you have one stable sexual partner.

    Anyone who has ever been sexually active may have HPV – it is a very common virus. In most cases, HPV is cleared from the body without causing any harm, but sometimes HPV can be remain ‘dormant’ for a number of years – even decades. This means it can stay in the body without causing any problems or showing up on a test.

    HPV can then go from being dormant to active later on, which is when it would be picked up in cervical screening. This means a new infection is not required for HPV to show up on a screening test. HPV that has been dormant in the body and therefore not detected during a previous screening, could become active and detected during a later screening test.

    If you are finding the process painful, consider speaking with your doctor or nurse as there are some ways to make it more comfortable. This includes asking the nurse to use a different size speculum (the tool used to see the cervix) or to help you find a more comfortable position.

    Remember screening is for people without symptoms. No matter your age, or if you’ve been screened recently, it’s still important to listen to your body and tell your doctor if something doesn’t look or feel normal for you.

    I hope that helps,
    Jacob, Cancer Research UK

  • catherine
    4 January 2024

    Thank you for your response to Joe about HPV dormancy. I have been thinking about this for a while- if the HPV is dormant at the time of the cervical screening test- therefore not detected, the cells would then not be analysed in the lab for cervical cancer under the new guidelines introduced in 2019. Is it possible that a woman could be infected with the HPV virus, this then could have started some of the cervical cells process into cancer cells and then the HPV goes dormant in the body before the screening? In this scenario the HPV could have caused cervical cancer but the test would not pick up the HPV virus therefore the cervix cells would never be looked at for cancer.
    I have also read in medical journals that somewhere between 5-10% of cervical cancers are not caused by the HVP virus and would therefore not be picked up in someone HPV negative. Is this true?

  • reply
    Jacob Smith
    10 January 2024

    Hi Catherine,

    Thank you for your comment.

    HPV causes 99.8% of cervical cancer cases in the UK. If the virus is dormant in the body at the time of cervical screening, it won’t show up on the screening test. In most cases, HPV will go away on its own without causing any problems and following a negative HPV screening result, the risk of cervical cancer is very small.

    Screening is for people without symptoms and no screening test is perfect, so it’s still important to listen to your body and tell your doctor if something doesn’t look or feel normal for you, even if you’ve recently been screened or are due to go soon. In most cases it won’t be cancer, but if it is finding it at an early stage can make a real difference.

    If you’d like to talk something through, you can call our free Nurse Helpline on 0808 800 4040 from 9am to 5pm, Monday-Friday.

    I hope that helps,
    Jacob, Cancer Research UK

  • Joe
    29 October 2023

    Can the hpv be detected even when it is lying dormant? Thanks

  • reply
    Jacob Smith
    1 November 2023

    Hi Joe,

    Thanks for your comment.

    HPV can have a ‘dormancy’ period, which is when the virus is in the body without causing any harm. This is usually a couple of years but it can stretch to decades. When HPV is dormant it can’t be detected by a test. But if HPV becomes active it can then be picked up, such as during cervical screening.

    This can be why you might not have HPV show up in a previous cervical screening, but then have it show up in a recent screening. Cervical screening can detect HPV and aims to prevent cervical cancer from developing.

    You can read more about HPV here: https://news.cancerresearchuk.org/2021/06/16/lets-talk-about-hpv-6-common-questions-answered/

    I hope that helps!
    Jacob, Cancer Research UK

  • Anne-Marie McGowan
    25 October 2023

    I have had a viral cancer in the back of the tongue which was HPV related. How do I know if I have cervical cancer now? Screening is not available for women over 70 (I am 75). So how do I get tested.

  • reply
    Jacob Smith
    27 October 2023

    Hi Anne-Marie,

    Sorry to hear about your diagnosis and thank you for your question.

    HPV is a very common virus and although some types can increase the risk of developing cervical cancer, having HPV does not mean you will definitely get cervical cancer.

    Cervical cancer is more common in younger women, with most cases bring diagnosed in females aged 30 to 34 in the UK. Cervical screening aims to prevent cervical cancer, and is offered between the ages of 25 and 64 when the benefits are biggest, and the harms are smallest. Screening is for people without symptoms, so no matter your age, tell your doctor if you notice any changes to your body that are unusual for you, or if you have concerns about your risk.

    Our Nurse Helpline is also available to support anyone affected by cancer. You can call the helpline on 0808 800 4040 between 9am and 5pm, Monday to Friday.

    I hope that helps,
    Jacob, Cancer Research UK

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    Comments

  • contact: (Robins onbu cler (gmail (com)
    14 March 2024

    Wooow!!! I am Hsv free……

  • Ann Trollope
    29 January 2024

    I had pre-cancer cells & had laser treatment in 1982 after giving birth to my son. Moving on to 2016 when I was successfully treated for HPV-related cancer at the base of my tongue. The side effects of the treatment are ongoing! I feel this aspect of HPV cancer is not as widely publicised as it should be – it affects men too!

  • Jessica
    24 January 2024

    I just wanted to echo Catherine’s comment from the 4th Jan. I have a huge concern that screening now only looks for HPV rather than testing for abnormal cells. Surely we should always be testing for abnormal cells in all screening just to be sure that there are no changes occurring, whether or not HPV is present. It doesn’t make sense that when there is a test that can pick up early cell changes, we stop doing that and only look for HPV. I say this as someone who was diagnosed with stage 1A back in 2017 and this was picked up because my smear picked up CIN3. I would much rather my test look for any abnormal cell changes rather than just HPV

  • Janis Hamilton
    23 January 2024

    I am 61 and am up to date with my screening. I have always tested negative to date . Is it the case that if I am in a stable relationship with one partner, that I no longer need to be screened? As I have not had children I find the sampling process quite painful.

  • reply
    Jacob Smith
    25 January 2024

    Hi Janis,

    Thank you for your question.

    Cancer screening is offered at ages when the benefits are biggest and the harms are smallest. If you are within the eligible screening age, it’s important to consider taking part in cervical screening, even if you have one stable sexual partner.

    Anyone who has ever been sexually active may have HPV – it is a very common virus. In most cases, HPV is cleared from the body without causing any harm, but sometimes HPV can be remain ‘dormant’ for a number of years – even decades. This means it can stay in the body without causing any problems or showing up on a test.

    HPV can then go from being dormant to active later on, which is when it would be picked up in cervical screening. This means a new infection is not required for HPV to show up on a screening test. HPV that has been dormant in the body and therefore not detected during a previous screening, could become active and detected during a later screening test.

    If you are finding the process painful, consider speaking with your doctor or nurse as there are some ways to make it more comfortable. This includes asking the nurse to use a different size speculum (the tool used to see the cervix) or to help you find a more comfortable position.

    Remember screening is for people without symptoms. No matter your age, or if you’ve been screened recently, it’s still important to listen to your body and tell your doctor if something doesn’t look or feel normal for you.

    I hope that helps,
    Jacob, Cancer Research UK

  • catherine
    4 January 2024

    Thank you for your response to Joe about HPV dormancy. I have been thinking about this for a while- if the HPV is dormant at the time of the cervical screening test- therefore not detected, the cells would then not be analysed in the lab for cervical cancer under the new guidelines introduced in 2019. Is it possible that a woman could be infected with the HPV virus, this then could have started some of the cervical cells process into cancer cells and then the HPV goes dormant in the body before the screening? In this scenario the HPV could have caused cervical cancer but the test would not pick up the HPV virus therefore the cervix cells would never be looked at for cancer.
    I have also read in medical journals that somewhere between 5-10% of cervical cancers are not caused by the HVP virus and would therefore not be picked up in someone HPV negative. Is this true?

  • reply
    Jacob Smith
    10 January 2024

    Hi Catherine,

    Thank you for your comment.

    HPV causes 99.8% of cervical cancer cases in the UK. If the virus is dormant in the body at the time of cervical screening, it won’t show up on the screening test. In most cases, HPV will go away on its own without causing any problems and following a negative HPV screening result, the risk of cervical cancer is very small.

    Screening is for people without symptoms and no screening test is perfect, so it’s still important to listen to your body and tell your doctor if something doesn’t look or feel normal for you, even if you’ve recently been screened or are due to go soon. In most cases it won’t be cancer, but if it is finding it at an early stage can make a real difference.

    If you’d like to talk something through, you can call our free Nurse Helpline on 0808 800 4040 from 9am to 5pm, Monday-Friday.

    I hope that helps,
    Jacob, Cancer Research UK

  • Joe
    29 October 2023

    Can the hpv be detected even when it is lying dormant? Thanks

  • reply
    Jacob Smith
    1 November 2023

    Hi Joe,

    Thanks for your comment.

    HPV can have a ‘dormancy’ period, which is when the virus is in the body without causing any harm. This is usually a couple of years but it can stretch to decades. When HPV is dormant it can’t be detected by a test. But if HPV becomes active it can then be picked up, such as during cervical screening.

    This can be why you might not have HPV show up in a previous cervical screening, but then have it show up in a recent screening. Cervical screening can detect HPV and aims to prevent cervical cancer from developing.

    You can read more about HPV here: https://news.cancerresearchuk.org/2021/06/16/lets-talk-about-hpv-6-common-questions-answered/

    I hope that helps!
    Jacob, Cancer Research UK

  • Anne-Marie McGowan
    25 October 2023

    I have had a viral cancer in the back of the tongue which was HPV related. How do I know if I have cervical cancer now? Screening is not available for women over 70 (I am 75). So how do I get tested.

  • reply
    Jacob Smith
    27 October 2023

    Hi Anne-Marie,

    Sorry to hear about your diagnosis and thank you for your question.

    HPV is a very common virus and although some types can increase the risk of developing cervical cancer, having HPV does not mean you will definitely get cervical cancer.

    Cervical cancer is more common in younger women, with most cases bring diagnosed in females aged 30 to 34 in the UK. Cervical screening aims to prevent cervical cancer, and is offered between the ages of 25 and 64 when the benefits are biggest, and the harms are smallest. Screening is for people without symptoms, so no matter your age, tell your doctor if you notice any changes to your body that are unusual for you, or if you have concerns about your risk.

    Our Nurse Helpline is also available to support anyone affected by cancer. You can call the helpline on 0808 800 4040 between 9am and 5pm, Monday to Friday.

    I hope that helps,
    Jacob, Cancer Research UK