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.

Over the last 10 years several studies in the UK have suggested that women from ethnic minority backgrounds are less likely to attend for cervical screening, the question of why this might be remains. Our recent work published last week in the British Journal of Cancer attempts to shed some light on this.  We surveyed 720 women aged 30-60 years old from Indian, Pakistani, Bangladeshi, African, Caribbean and white British backgrounds, using quota sampling to ensure a large enough sample of women from each ethnic group were included. Compared to the white British women, women in each of the ethnic minority groups were between 5 and 13 times more likely to be a non-attender at screening, i.e. they had not been screened in the last 5 years. This is after adjusting for age, marital status and education level.

Never heard of screening:
Among the ethnic minority women 24% said they had never heard of cervical screening or they had never received an invitation. These women were more likely to have migrated to the UK as adults, not speak English well and have no formal qualifications. This finding is in line with our previous qualitative work which suggests a general lack of awareness about the cervical screening programme. It therefore seems important that we find ways to engage these women with the issue of cancer screening, and raise their awareness of the programme and their eligibility to take part. In England, all women aged 25-64 who are registered with a GP receive regular screening invitations, but our findings suggest that this information isn’t getting through to some groups.

Been screened before, but not recently:
We also identified a different group of non-attenders who had been screened in the past (more than 5 years ago), but had not been screened as recommended, despite receiving a letter reminding them to go. Overall 37% of ethnic minority women fell into this group. These women were more likely to be in the older age group (50-60 years) but other socio-economic factors (such as education level, migration status and language) didn’t predict who fell into this group. Exploring the reasons for being overdue cervical screening in older women is important as recent work suggests that not being screened between the ages of 50 and 64 years is associated with a greater risk of cervical cancer when women are over 65 years. There is also evidence that women over 65 years from both Asian and Black backgrounds have higher rates of cervical cancer. We looked at a range of attitudes to screening and found that women who had not attended as recommended were more likely to think that screening didn’t apply to them, either because they did not have any symptoms or because they were not sexually active. Some considered screening to be important, but had difficulty fitting it in around other commitments. This finding is consistent with our qualitative work where one Bangladeshi woman said; “It wasn’t that I didn’t want to do it, I felt that it wasn’t a great priority for me at that time, everything else was more important”. For these women interventions should be designed to ensure an understanding of the purpose of screening and the potential benefits for asymptomatic women and those who are not currently sexual activity.

In this study and others, we are trying to gain a better understanding of why some people don’t take part in cancer screening. As this paper shows, people’s reasons can be very different, from not knowing anything about screening, to thinking it’s important but being too busy to go. By understanding more about these different reasons, we can help to ensure that everyone makes an informed choice about screening, and is able to take part if they want to. We hope this work will help to reduce inequalities in screening participation and make sure that everyone is properly informed about the purpose of screening.

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)