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Behind the headlines: HPV self-sampling

Posted on: Wednesday, 24th February 2021 by Imogen Pinnell, Health Information Manager

One of the big news stories today is about YouScreen: a HPV self-sampling study launching in parts of North and East London. 

At Jo’s we have been calling for self-sampling in cervical screening for a long time and have been part of the steering group for the YouScreen study, so we’re delighted that it has finally launched. It couldn’t have come at a better time, with our recent research finding that one in ten think it’s best to put off going for screening during the pandemic, so a test which doesn’t require you to go into your GP surgery is truly incredible.

Right now YouScreen is running in five boroughs of North and East London. The aim of the study is to start to provide evidence around how we can introduce self-sampling in the best possible way. There’s no point in introducing changes to cervical screening unless we know they are effective and will help to make the test more accessible and acceptable to women and people with a cervix. This study is just the first step but, one day soon, we hope to see it offered as an option to everyone in the UK who is eligible for cervical screening. 

We know the news has created lots of questions. So let’s take a look and de-mystify some of your concerns. 

“You can’t take a smear test at home” 

There is lots of talk about ‘DIY smear tests’ or ‘home tests’ and how you might do a test yourself using a speculum. Self-sampling tests are actually completely different from the cervical screening test you would have at the GP. They don’t use a speculum; instead they involve a simple swab which collects a sample from the vagina, not the cervix. The sample is tested for HPV, the virus which causes almost all cervical cancers, this means if you do not have HPV your risk of cervical cancer is very low.

If you have ever used an at-home STI kit, it’s very similar to this process.

This video by YouScreen explains more.

“What if I can’t take the sample correctly?” 

Research shows 99% of people can self-sample accurately. The kits come with detailed instructions, as well as a video, to help you take the sample. If for any reason the sample is inadequate you will be sent another self-sample kit by post within a few weeks. 

“I live outside London, why can’t I self-sample?”

The YouScreen study is simply one piece of research. It is being run by King’s College London and the North Central London and North East London Cancer Alliances. Other trials are being planned across the UK and hopefully, soon, enough evidence will be gathered for it to be offered much more widely.

“Why isn’t it carried out by a healthcare professional?” 

We know cervical screening can be difficult for many reasons. Self-sampling offers a valuable option for those who find it hard to attend cervical screening. Do remember that it is a choice and if you are offered a YouScreen kit but want to have the test in your GP surgery you will still be able to do so.

If you are experiencing any worrying symptoms like abnormal bleeding or a change to your discharge, don’t wait for cervical screening or a YouScreen kit - book an appointment with your GP. 

“How do you know if you’ve swabbed the cervix?”

The test is for HPV and HPV lives in the genital area instead of just the cervix. Taking a sample from vagina will pick up whether the virus is present and means you do not have to reach your cervix.

“Not every case of cell changes or cervical cancer is caused by HPV”

No test is perfect, but we know that testing samples for HPV is very effective at detecting the virus and cervical cell changes that are most at risk of developing into cervical cancer. Samples collected through self-sampling and samples taken by a GP are both tested for HPV so it is the same process. Almost all cervical cancers - in fact, 99.7% - are caused by HPV, so knowing who has it means they can get the right monitoring or care. 

While cell changes can develop without HPV, it is very unlikely these would go onto develop into cervical cancer. 

What happens after you self sample?

The majority of results will be clear, which means HPV isn’t present. This means that your risk of cervical cancer is extremely low and you will be invited for your next test in 3 or 5 years, depending on your age and where you live.

If HPV is found, you will be asked to book an appointment for a follow-up cervical screening test at your GP practice. This is a standard test with a speculum to take a sample of cervical cells for testing. One of the best things about self-sampling is this means the majority of people will not have to have a GP appointment. 

“Is it as good as a test done by your GP?”

What’s amazing about self-sampling is that it provides an opportunity for those who find the test hard, or have previously not attended, an opportunity to access screening. Other studies have shown that it leads to around a 10% increase in attendance. The accuracy of the test is similar to a test at the GP and self-sampling is offered routinely in other countries like Australia, Denmark and the Netherlands.

Studies have also shown that high-grade cell changes detected through self-sampling are, on average, about 2.3 times higher, showing they capture those more at risk of cervical cancer. The self-sample is a very good option if you don’t wish to have the test taken by a doctor or nurse. 

“Hasn’t self-sampling been trialled before?”

This is the first time self-sampling has been trialled as part of the cervical screening programme. 

Previous research has shown that there is lots of interest in self-sampling. The results from this study (and other studies) will build on this and help us to understand the best way to offer self-sampling kits to people who are overdue cervical screening. 

“I don’t know enough about HPV”

HPV can be really complicated to understand. We have lots of information about every aspect of HPV and cervical screening, in addition to support services to help you, whether you are waiting for a test, dealing with results or just have a query.

Categories: HPV self-sampling