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    A ‘fuzzy’ distinction between different groups of cervical screening non-participant

    By Laura Marlow, on 17 August 2018

    Over the last two years we have blogged about our work exploring different groups of non-participants at cervical screening (aka the smear test). We have shown that women who do not attend for their smear test can be either unaware of screening, unengaged with screening, undecided about screening, intending to get screened (but not yet got around to it) or they may have decided not to get screened.

    In our most recent study funded by Cancer Research UK and published in Psycho-oncology, we interviewed women aged 26-65 years (n=29) from these different ‘non-participant’ groups to gain a deeper understanding of their screening decisions. We found that there are differences in the salience of particular barriers to screening, for example women who intend to get screened often focus on more practical barriers to screening and women who have decided not to attend often focus on past negative experiences of screening. However, there were also examples where even within groups of non-participants women had quite varied views e.g. some decliners felt the smear test procedure was not something they wanted to do, even though they knew the risks, other decliners thought smear tests were no big-deal but didn’t think they needed one because they weren’t at risk of cervical cancer.

    Our findings also suggested that the distinction between different non-participant groups is ‘fuzzier’ than we originally thought. For example, many of the undecided women described not really wanting to have a smear test, but feeling less strongly about this than decliners. For women who intended to get screened, there were some that did not really want to attend, but felt they ought to (more similar to decliners or undecided women), while other intenders were happy to have a smear but practical barriers stopped them from participating.

    This ‘fuzziness’ could mean that distinct interventions for one type of non-participant group may not work for some people in that group, but might work for others classified in a different way. Alternatively, there may be one intervention that could be successful across groups for different reasons, for example HPV self-sampling could address practical barriers (relevant to intenders) and concerns about the screening procedure (relevant to some decliners).

    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.

    I’ve never heard of it; I don’t want to; it’s on my list

    By Laura Marlow, on 3 July 2017

    Authors: Amanda Chorley, Laura Marlow, Jo Waller

    One of our previous blogs discussed how rates of cervical screening (aka the smear test, or pap test) have been declining in the UK. Last year, screening uptake rates fell to 72.7%, meaning that over a quarter of women had not been screened as recommended (1). A better understanding of why women are not being screened is vital. If women are making informed decisions not to attend this is perfectly acceptable, but if women do not understand cervical screening or find it difficult to attend for other reasons (e.g. inconvenient appointment times), interventions to address this are important. Treating women who do not attend screening as a single group of “non-participants” means those with very different screening experiences and intentions are considered to be the same. Unsurprisingly this means that “one size fits all” interventions to increase screening participation do not have large effects, as they are unlikely to be suited to individual women’s differing needs.

    In our latest study published in the European Journal of Cancer last week, we used the Precaution Adoption Process Model (PAPM)(2) to try and improve our understanding of the ways in which women who do not attend screening may differ. The PAPM is a model from behavioural science which states that before carrying out a health behaviour (in this case cervical screening), a person must move through a number of stages. A person must first be aware of the health behaviour and engaged with it before they can make a decision whether or not to carry it out. If they do decide to carry out the behaviour, they must then overcome any barriers which may be in the way of this (e.g. getting to the screening appointment). Importantly, the PAPM also includes the possibility for people to make an active decision to not participate in the behaviour. By classifying women according to the PAPM we hoped to identify what the most common type of screening non-participant is, and whether women within a particular group tend to have shared characteristics.

    793 (27%) of the 3113 women we surveyed were either overdue for screening (including those who had never had a smear test) or said they did not plan to go for screening when next invited. Of these non-participating women, just over half said that they do intend to go. These women tended to be younger than women who were up to date with screening, and were more likely to be single and from less affluent backgrounds. Perhaps more surprisingly, given the fact that all should have received an invitation and leaflet about screening as part of the NHS programme, 28% of non-participating women said that they had never heard of cervical screening, smear or pap tests, even after being shown a photo of the procedure. These women were more likely to be younger and from ethnic minority and less affluent backgrounds, and to have English as a second language. Finally, 15% of non-participating women said that they had made a decision not to be screened in the future. These women tended to be older, and most had been screened before. As with the other two groups, they were also more likely to be from less affluent backgrounds.

    The differences between these groups of non-participants show how important it is to consider the different reasons for non-participation. Changes such as more flexible clinic hours or text message reminders may help women who do want to go for screening but have found it hard to get around to it. However, for women who are unaware of cervical screening, more accessible information about the programme is a vital first step towards making an informed choice about whether to participate or not. As we found that unaware women were more likely to be from ethnic minority backgrounds and less likely to speak English as their first language, it may be helpful to provide information in more languages and through TV or radio advertisements rather than just using written materials. Choosing not to be screened is a legitimate choice, and one that needs to be respected by medical professionals. However, in order for women to make an informed choice it is important that they have access to relevant information, including the benefits, risks, and limitations of screening. For some of the women who have decided not to go in the future, it may be the case that they have sought out this information. For other women the decision not to go for further screening may be due to a previous bad experience.

    Our survey goes some way to showing that there is not just one type of cervical screening non-participant, but different groups of women with different experiences, choices, and needs. In the future we hope to look further into these differences, both between and within the different groups described in this post.

    1. Screening and Immunisations team ND. Cervical screening programme: England, 2015-16. Health and Social Care Information Centre, 2016, p. 1 – 76.
    2. Weinstein N. The Precaution Adoption Process. Health Psychology. 1988; 7: 31.

    Congratulations to Dr Jo Waller

    By Alice Forster, on 7 November 2016

    Alice Forster and Laura Marlow

    Today at the NCRI Cancer Conference in Liverpool, the inaugural Jane Wardle prize was awarded to our very own Dr Jo Waller to recognise her world-leading contribution in cervical cancer prevention. The prize was set up by Cancer Research UK in memory of Professor Jane Wardle who died last year. Jo has been at the Health Behaviour Research Centre for 15 years and was herself mentored by Jane Wardle. In this blog we highlight some of Jo’s key research in cervical cancer prevention during this time.

     

    In 2005, Jo completed a PhD exploring psychosocial issues surrounding the viral aetiology of cervical cancer. These early studies explored the emotional and social consequences of a HPV diagnosis and how women make sense of a HPV positive result at cervical screening. The findings highlighted extremely low awareness of HPV and poor understanding about how cervical cancer develops. This work also showed the importance of providing good information to ensure minimal anxiety when receiving a HPV positive result at screening and to avoid stigmatising cervical cancer.

     

    Jo and her colleagues went on to explore psychosocial issues surrounding HPV vaccination before and after its introduction in 2008. This research helped identify the most appropriate age for the vaccine and contributed to the content of the information materials provided. In addition, this work offered reassurance that vaccination against a sexually transmitted infection (the HPV vaccine) did not result in changes to girls’ sexual behaviour as some media reports had suggested. Jo’s work has also explored why certain sub-groups of the population, such as young women and ethnic minority women are less likely to participate in cervical screening.

     

    In 2014, Jo was awarded a prestigious Cancer Research UK Career Development Fellowship to continue her research in cervical cancer prevention. Jo now formally manages a team of researchers and her current research activities include understanding non-participation in cervical cancer screening and HPV vaccination, developing interventions to improve uptake of these cervical cancer control interventions, and evaluating the psychological impact of primary HPV testing within cervical screening.

     

    Jo has also been involved in numerous other bodies of work over the last 10 years including development of the Cancer Awareness Measure and studies exploring informed choice about screening. She is also an informal mentor to many students and colleagues. We are all very proud of Jo’s achievement today. Well done Jo!

     

    You can read more about our current work in cervical cancer prevention on our website.

    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)