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When women are too busy for cervical screening or have had a bad experience, could HPV self-sampling be an appealing alternative?

By Laura Marlow, on 17 April 2018

By Kirsty Bennett and Laura Marlow

In the UK, women aged 25 to 64 are regularly invited for cervical screening (the ‘smear test’ or ‘Pap test’). While uptake of cervical screening is generally high, it has been declining in recent years, and in 2017 just over a quarter of women did not attend screening. Studies exploring screening non-attendance suggest a wide range of reasons that women do not go, including practical barriers such as difficulties arranging appointments, emotional barriers including embarrassment and fear of what the test might find and low perceived risk of cervical cancer.

One of our previous blogs described how most non-participants at screening are aware of screening and have made a decision about future attendance. The majority of these intend to go despite currently being overdue or unscreened, but some have made an active decision not to attend for screening in future. In our latest study, funded by Cancer Research UK as part of a larger project on cervical screening, we explored barriers to cervical screening among 426 women who had made an active decision not to attend in the future, and compared them with 117 women who intended to be screened in the future.

Participants were shown sixteen possible barriers which covered a variety of reasons why some women might not attend screening, and they were asked to choose the ones that applied to them. Women who had made an active decision not to be screened were more likely than the ‘intenders’ to say that screening wasn’t relevant to them because of their sexual behaviour (reported by 27%).  Cervical cancer is caused by a sexually transmitted infection (HPV, or human papillomavirus – see below), so some women had decided not to go for screening because they were no longer sexually active, or had been in the same relationship for a long time.  They also reported having more important things to worry about than screening (reported by 12%) and some said they had weighed up the risks and benefits and decided it was not worth getting screened (reported by 13%).

We went on to ask women about their interest in HPV self-sampling. HPV is a very common sexually transmitted infection and nearly all cases of cervical cancer are caused by this virus. It can take many years for an HPV infection to develop into cervical cancer so a woman’s current sexual behaviour does not necessarily reflect her current risk. Although it’s not offered by the NHS Cervical Screening Programme at the moment, HPV self-sampling allows women to collect a sample themselves, usually by using a vaginal swab. The sample is then sent to a laboratory and tested for HPV. Many of the women who had decided not to attend cervical screening (66%) indicated that they would be interested in self-sampling. Self-sampling seemed to be particularly appealing to women who reported a bad experience of screening in the past, and those who were too busy or embarrassed to attend. Shifting the perceived cost-benefit ratio for these women by offering HPV self-sampling might increase screening participation in this group. Studies in several countries have found that offering self-sampling to women who don’t attend for screening can be a very effective way of increasing participation.  With the shift to HPV primary screening planned for 2019 in England, self-sampling may become a feasible option for some women.

Reference:

Kirsty F Bennett KF, Waller J, Chorley AJ, Ferrer RA, Haddrell JB, Marlow LAV. Barriers to cervical screening and interest in self-sampling among women who actively decline screening. Journal of Medical Screening. Published online.

The new Bowel Scope Screening programme: Who is taking part?

By rmjdbon, on 21 September 2015

In March 2013, the NHS in England introduced the Bowel Scope Screening programme. This is a one-time only screening offered to people at age 55.

Bowel scope screening is a test (also known as flexible sigmoidoscopy or flexi-sig) done by a specially trained nurse or doctor. They use a thin flexible tube with a tiny camera on the end to look inside the large bowel. The screening looks for growths or polyps in the bowel and, if they find any, can be removed straightaway. Bowel polyps are harmless but if they are not removed, these polyps could turn into cancer. Therefore, by removing pre-cancerous polyps, the screening test helps to prevent bowel cancer. The test can also find cancer that is already developing and detecting cancer early increases the chances of successful treatment.

A previous large study showed that screening using flexible sigmoidoscopy can prevent bowel cancer by removal of pre-cancerous polyps and significantly reduces bowel cancer deaths. This evidence led to the introduction of bowel scope screening within the NHS Bowel Cancer Screening Programme.

The bowel scope screening programme is being rolled out in stages. Our latest study is the first to look at the participation rates within the new bowel scope screening programme for the first six screening centres.

Getting the full public health benefits of screening depends largely on how many people take part and go to their screening appointment. In the first 14 months, these six centres invited 21,187 individuals to have bowel scope screening: 43% of those invited had the screening test. This is encouraging for a fairly new and invasive test, especially as there are currently no publicity campaigns for bowel scope screening.

What is most worrying in our findings is that people living in poorer areas were less likely to take up the screening test (33%) than people living in more affluent areas (53%). Differences in uptake could mean that people from more deprived areas will be much less likely to benefit from this test. This might create inequalities in the number of people diagnosed with late stage bowel cancer when treatment is often more invasive and outcomes less favourable.

Interestingly, men were more likely to go for bowel scope screening when invited than women (45% vs 42%). This is surprising as women are more likely to participate in the existing bowel cancer screening programme which uses a test done at home, called faecal occult blood test (FOBt). Women also have high rates of uptake for breast and cervical cancer screening. The uptake rate also varied between the six centres, partly because of differences in deprivation but mostly because of other service-related differences which are yet to be explored.

Bowel cancer is common but bowel scope screening helps prevent it. Although the initial participation rate is encouraging, the differences in uptake between more deprived and more affluent areas are a concern. Bowel scope screening will be fully rolled out in England by 2018 and in light of its huge health benefits, we need to invest in strategies to increase public participation and to narrow inequalities in uptake so that everyone has the chance to benefit from this screening.

This analysis is part of an ongoing larger study (Flexi-Quest) funded by Cancer Research UK which wants to find out what people think about bowel scope screening, and why some people may be less likely to go for screening. This first look at the data gave an indication about differences in participation rate; however, the findings show that there could be other factors important for participation. As part of Flexi-Quest, we will be conducting surveys and interviews that aim to identify ways in which we can remove barriers and reduce inequalities in bowel scope screening.

References

Atkin W, Edwards R, Kralj-Hans I, et al. Once-only flexible sigmoidoscopy in prevention of colorectal cancer: a multicentre randomised controlled trial. Lancet 2010;375:1625–33.

McGregor, L.M., Bonello, B., Kerrison, R.S., Nickerson, C., Baio, G., Berkman, L., Rees, C.J., Atkin, W., Wardle, J., & von Wagner, C. Uptake of Bowel Scope (Flexible Sigmoidoscopy) Screening in the English National Programme: the first 14 months. Journal of Medical Screening 2015. DOI  10.1177/0969141315604659

Public Health England. NHS Bowel Cancer Screening Programme: NHS bowel scope screening, http://www.cancerscreening.nhs.uk/bowel/bowel-scope-screening.html (2015, accessed 26 August 2015).

Jade Goody: Her role in women’s cervical screening decisions

By Jo Waller, on 23 January 2013

Type Jade Goody’s name into Google Images and you find an array of pictures from bouncy Big Brother star, through smiling but bald cancer patient, to pain-wracked dying woman.  Jade was diagnosed with cervical cancer in 2008 and died at the age of 27 just a few months later.  Her tragic story received unprecedented media attention and the general public were privy to the intimate details of the last months of her life.  In what has become known as the ‘Jade Effect’, her story had an extraordinary impact on women’s participation in cervical screening – we think about half a million extra women went for screening during the time of her illness.

As psychologists, we were interested in which women were influenced by Jade’s story and why.  To try to understand more about the Jade Effect, we did a survey of 890 women in England – all of them within the age range that are offered screening..  We collected information about women’s age and their social background and we asked them if they’d been affected by Jade’s story in their decisions about cervical screening.  The survey was done about 18 months after Jade’s death, so we asked women to think back over that time period.

The most interesting finding was that younger women were more influenced by Jade, and so were women who had children at a younger age, and who came from more deprived backgrounds.  So why do we think this is?  Well, Jade was 27 when she died, and it’s no secret that she had a hard childhood in Bermondsey – hers was a ‘rags to riches’ story.  She also had children young – in her early 20s.  So it seems possible that the women who were most influenced by her were those who could identify with her.  Perhaps there was a sense of ‘it could have been me’ – and this was the prompt they needed to go for screening.  Suddenly the stakes were raised and the barriers to having a smear test didn’t seem so important.  It’s also possible that some people are more affected by stories than facts.  The blanket media coverage and the emotional story of Jade’s illness probably affected people very differently compared with the kind of factual leaflets that are usually used in screening programmes.  It could be a case of heart vs. head, and perhaps as psychologists and health educators, we need to realise that stories, or ‘narratives’ as they’re sometimes known, can be a good way to get our message across.

 

Jo Waller (j.waller@ucl.ac.uk)

 

References

Lancucki L, Sasieni P, Patnick J, Day TJ, Vessey MP.  The impact of Jade Goody’s diagnosis and death on the NHS Cervical Screening Programme.   J Med Screen. 2012 Jun;19(2):89-93. doi: 10.1258/jms.2012.012028. Epub 2012 May 31.

Marlow LA, Sangha A, Patnick J, Waller J.  The Jade Goody Effect: whose cervical screening decisions were influenced by her story?   J Med Screen. 2012 Dec 27. [Epub ahead of print]

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)