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.

Vaccines help prevent infectious diseases. It is important that most people get vaccines and if enough people are vaccinated, protection is also given to people who have not been vaccinated. This is known as herd immunity. Even though most children do get the vaccines they are offered, there are still some areas in the UK where there have been outbreaks of disease.

In general, parents in the UK need to give permission for children under the age of sixteen to have a vaccination. Whilst many parents choose for their children to be vaccinated, some parents decide not to. It is important for us to understand why parents might decide not to vaccinate their children, so that we can address any issues that might be stopping parents from vaccinating. Only once we understand the reasons for non-vaccination can we start to think of ways to tackle them, to try and increase uptake of childhood vaccinations. The best way for us to find out what these issues might be is to review existing research in this field, much of which has been qualitative. Qualitative research aims to understand a topic by finding out people’s opinions, attitudes, motivations etc. This is often done by conducting interviews or focus groups.

In our review, published this week, we aimed to do just this; to look at qualitative studies in the UK that had looked at vaccines for children, to try to understand what might influence parents’ decisions about vaccination. We reviewed a total of 34 studies. The results of each of these studies were then re-analysed to find common themes between them.

We found that parents make decisions about vaccination in two different ways: some made decisions automatically, and others made more intentional decisions.

Automatic decisions

Automatic decisions are decisions that are made by parents without too much thought. When parents made these types of decisions they were often happy to go along with the advice about vaccination that was being given to them from health professionals. Parents also made automatic decisions when they did not feel like they had a choice and/or when they were copying the decisions other people had made about vaccinating their children. These types of decisions are often made quickly and parents did not appear to weigh up the pros and cons of vaccination when making them.

Intentional decisions

Intentional decisions are decisions that parents have taken more time to think about. When parents made these types of decisions they often weighed up what they perceived to be the risks and benefits of vaccinating and often judged how appropriate it was to vaccinate their child based on other people’s advice or experiences. Many parents making intentional decisions felt responsible and/or were worried about being judged by other parents for the decision they were making. Parents’ emotions had an effect when making intentional decisions, as did the media and what was being reported about vaccination.

Additional factors

The media affected the trust that parents had in information they received about vaccination, and in medical professionals, the government and the NHS. Trust (or a lack of trust) was important for parents when making both automatic and intentional decisions. Practical issues, for example travelling to the vaccination clinic, having a lack of time or being unable to get an appointment, also affected the decisions of parents who had decided to vaccinate, regardless of whether they had made an automatic or intentional decision.

What does this tell us?

Many parents who made automatic decisions had decided to vaccinate their child. However, some of these parents had decided to vaccinate because they felt pressured to do so. Other parents had copied other people and not vaccinated their child. Some parents who made intentional decisions had involved others in their decision-making, by speaking to family members, friends or work colleagues.

The findings of this review highlight how important social factors are for parents when making decisions about vaccinating their child. The impact of one child not having a vaccination may go beyond just that child being unprotected, as that decision may influence other parents’ decisions. By understanding more about the decisions parents make about vaccinating their children we will be in a better position to start to think of things we can do to encourage more parents to give permission for their children to have childhood vaccinations.

It’s important that most people get vaccines

Most people get the vaccines offered to them as part of the NHS immunisation programme. They help prevent, and reduce the spread of diseases. Because of vaccines we no longer have smallpox anywhere in the world and polio is almost wiped out too.

For some vaccines, fewer people from some ethnic minority backgrounds get them compared to everyone else in the UK. For example, children from Nigerian, White Polish or Somali backgrounds are less likely than other groups to be vaccinated against Diphtheria in London (1). For other vaccines, more people from some ethnic minority backgrounds get them compared to everyone else. For example, one study found that children from Black and Asian backgrounds living in the London borough of Brent had higher uptake of the first dose of the MMR vaccine than children from White backgrounds (2).

Because of the way vaccination works, it’s really important that most people get the vaccines they are offered. If enough people get vaccines, protection is given to the people who cannot get them for medical reasons or are too young. So although the vast majority of people get vaccines, it’s still useful to understand why some people do not, so we can work out how we might be able to increase the number of people who get them. Because of the differences in who is and is not getting vaccines, we decided to explore what it was that might make children from ethnic minority backgrounds more or less likely to get vaccines.

What did we do?

In our new review, we looked at published studies where parents from ethnic minority backgrounds have been spoken to about why they had or had not chosen to vaccinate their children. We just looked a studies that had used qualitative methods, like interviewing parents and speaking to small groups of parents all at once (called focus groups). We used a technique called Thematic Synthesis to bring all of the findings together, which involves a number of researchers labelling the things that people had said and finding common themes within these labels.

What did we find?

Not surprisingly we found that most of the things that had convinced parents from ethnic minority backgrounds to get vaccines for their children, or had stopped them from doing so, were the same as the things that parents in general tell us. For example, parents had said that they were happy to go along with the doctor’s recommendation; that their decision had been influenced by other people and had found that things like transport problems had stopped them getting vaccines.

But there were also some things that had affected parents’ decisions about vaccines that were linked to ethnicity. For some parents, their religion instructed them about whether vaccines were needed for their children. Other parents were influenced by their experiences of having lived in other countries. For some, this made them appreciate the healthcare that is offered in the UK, but others felt that particular vaccines were not needed because they were not offered to them back home. Scare stories in newspapers or on the television can sometimes cause parents to worry about vaccines. We found that some parents who did not speak English had not heard these stories and so did not have the worries that other parents might. Some parents had wanted information about vaccines to be given to them in the language they speak at home. Finally, vaccines go through many years of testing and are studied in groups of people from all different ethnic backgrounds. Some parents said that they wanted to know about this testing, so that they could be reassured that their children would react to the vaccines in the same way as other children.

We now have a better understanding of why some people do and do not get vaccines

This research has helped us to understand why children from some ethnic minority backgrounds might be more likely to get some vaccines. It also told us the type of information that parents from ethnic minority backgrounds want to know about vaccines to be confident that giving their child a vaccine is the right thing. In some situations it might be a good idea to tailor information about vaccines to parents from particular ethnic minority backgrounds to make sure they are getting all the information they want to have.

References

1. Wagner KS, van Wijgerden JCJ, Andrews N, Goulden K, White JM: Childhood vaccination coverage by ethnicity within London between 2006/2007 and 2010/2011. Arch Dis Child 2014, 99(4):348-353. DOI: 10.1136/archdischild-2013-304388
2. Mixer RE, Jamrozik K, Newsom D: Ethnicity as a correlate of the uptake of the first dose of mumps, measles and rubella vaccine. J Epidemiol Community Health 2007, 61(9):797-801. DOI: 10.1136/jech.2005.045633

Authors: Alex Ghanouni, Cristina Renzi & Jo Waller

In our last blog, we talked about ‘overdiagnosis’, a concept that many people are unfamiliar with – that is, when a medical test finds an illness that would never have caused any harm during a person’s lifetime.

As a follow-up study, we were interested in how much information the UK and Australian public could find online about overdiagnosis in the specific context of breast cancer screening.

Why breast cancer screening?

We chose breast screening because it is a setting in which the issue of overdiagnosis has received a lot of attention in the UK in recent years: in 2011, Cancer Research UK and the Department of Health commissioned a review of studies with the aim of understanding how much overdiagnosis happens in breast screening.

Likewise, the NHS recently made substantial changes to the information leaflets provided to women invited for breast screening, with the aim of ensuring that they would understand that overdiagnosis was one possible outcome of being tested.

Breast screening sometimes diagnoses ‘ductal carcinoma in situ’ or ‘DCIS’, which is an abnormality that can become a symptomatic cancer over time. However, it can also be slow growing and never pose a health risk, meaning that a large proportion of overdiagnosis in breast screening is due to DCIS.

As well as finding out what kind of information people could find about overdiagnosis on health websites, we were interested in what explanations those websites provided about DCIS, and also what kinds of statistics were used to give the public a sense of how many people are affected by overdiagnosis.

We used a Google search for ‘breast cancer screening’ to find the most relevant health websites in the UK and Australia (such as NHS Choices and Cancer Australia). We examined in detail ten websites from the UK and eight from Australia.

What did we find?

Our main findings were that most UK websites included some information about overdiagnosis and also DCIS. The websites provided a range of statistics stating, for example, that every year around 4,000 women in the UK are overdiagnosed and overtreated following screening and that around 3 in 200 women screened would be overdiagnosed and overtreated (considering women aged between 50 and 70 years undergoing screening every three years).

Such information was available less often on Australian websites, although the kind of information was similar when it was present (and several websites linked to more detailed websites instead of hosting the information themselves).

Why is this important?

One reason for doing this research was that a similar study had been carried out more than ten years ago in 2000, showing that overdiagnosis and DCIS were rarely described. We thought that things might have changed in the meantime as more and more people use the internet to understand health issues.

In fact, we found that although not every piece of information on overdiagnosis and DCIS is available on every website, it is more available than it was in the past. In time, this might lead to a greater level of public awareness about the issue.

The number of girls receiving the Human Papillomavirus (HPV) vaccination is at an all-time high, according to a new report published this month by Public Health England; In the six years since the vaccine became routinely available over 2.3 million girls have received it, and in the last three years over 86% of girls offered the vaccine have received it.

Despite these figures, previous research has shown that girls from Black and Asian ethnic minority backgrounds are far less likely to receive the vaccination than their White British counterparts.

To find out why this might be happening, the EMPATHIC study has been set up; EMPATHIC is an interview study which aims to investigate parents’ opinions and experiences of HPV vaccination. The intention is to work out from these interviews what additional information or resources parents need to help them make an informed decision about the vaccination.

What is HPV and why is the vaccination important?

HPV is a common virus that affects the skin and moist areas that line the body (e.g. the mouth, vagina, anus) and is spread by skin to skin contact, including sexual contact. Around 8 out of 10 people will be infected with HPV at some point in their life but in most people the virus goes away on its own and doesn’t cause any symptoms. However, for some people the virus can cause cell changes which can increase the risk of some cancers.

There are over 100 different types of HPV. Around 13 types can cause cancer and two types in particular (type 16 & 18) have been shown to cause most cases of cervical cancer (around 70% of cases). HPV is spread to the cervix through sexual contact and most infections are symptomless, so it is not obvious if someone carries the virus. Girls in the UK are offered vaccination against HPV to protect against these two types that cause cervical cancer.

Girls are offered the HPV vaccination when they are in year 8 at school. It is offered to girls at this age because the vaccine is most effective if it is given before girls become sexually active. If their parents provide consent for them to have the vaccination they will have two injections spaced six months apart. The vaccination could prevent over 70% of cervical cancers. It’s therefore important for all girls to have the opportunity to get the vaccination.

What does the EMPATHIC study involve?

We are planning to conduct individual interviews with the parents of girls (who are in years 9 to 11 at school) from various backgrounds whose daughters have and haven’t had the HPV vaccine.

We are working with schools and community groups in London who are helping us to contact parents that might want to be involved. We are also happy to for parents to get in touch with us if they think they might be right for the study.

The interviews will last around 30 to 60 minutes. Parents will be asked to discuss their thoughts about the HPV vaccination and past experience of vaccination.

What will happen after the interviews?

After we’ve done all of the interviews (we’re aiming for 30 to 60) we will analyse the information and interpret the findings, which will hopefully result in some suggestions about what information or resources are needed to help parents make an informed decision about their daughter having the HPV vaccination.

The next step will be to design some type of intervention based on what we find. This could be an information leaflet, text message reminders, or meetings held at the school, we don’t know yet; our decision will be based on our findings. Whatever intervention we develop will be tried out and we will evaluate how useful it is, to see whether it is something that could be used on a wider scale to help more parents make decisions about the vaccination.

Get in touch!

We’d like to hear your thoughts on the study. If you have any comments or are just interested in learning more, please contact Dr Alice Forster on 0203 108 3293 or at alice.forster@ucl.ac.uk.

Article Reference: Public Health England (2015) Human Papillomavirus (HPV) Vaccine Coverage in England 2008/09 to 2013/14 (Report no. 2014797). London: Public Health England.

Most well-known for its link with cervical cancer, human papillomavirus (HPV) has been linked to a number of other cancers including some cancers of the head and neck.  The number of HPV-related head and neck cancers diagnosed in the UK has doubled in recent years so health professionals in this field are finding themselves having to talk to their patients about HPV.
Health professionals have an ethical obligation to ensure accuracy and transparency when explaining to patients that their cancer has been caused by HPV. But because HPV is sexually transmitted, discussing it could be a potential challenge for health professionals with little experience of discussing sex with their patients. In order to understand the experiences and challenges of talking to head and neck cancer patients about HPV, we interviewed fifteen health professionals (surgeons, oncologists, specialist nurses and allied health professionals) working in the field.
Most of the health professionals we interviewed did talk to their patients about HPV, but there were mixed views about the benefits of this. Some felt it was useful for patients to know the cause of their cancer, particularly because HPV-related head and neck cancer has a better prognosis than the more ‘traditional’ tobacco and alcohol-related cancers. Others felt that as patients’ HPV status would not affect their treatment, such discussions were unnecessary.
Health professionals discussed how HPV-related head and neck cancer patients can have different rehabilitation needs to those with head and neck cancer that’s caused by alcohol and tobacco because they tend to be younger and in better health. For example, one speech and language therapist said: ‘we’ve got a longer period of survivorship for younger people who are still actively employed and so their functional rehabilitation becomes a bigger issue’. The impact that an HPV-related diagnosis could have on relationships was also considered important.
Participants identified some key messages about HPV that they felt were important to include in their discussions with patients. Explaining to patients that HPV is very common and linked with normal sexual behaviour helped to normalise the infection. Drawing parallels with cervical cancer and mentioning the HPV vaccination had also been found to be helpful.
The range of experiences discussed suggests a need for clinical guidance to ensure that patients are receiving consistent messages. In line with a previous study of dentists in the United States, most of the health professionals we interviewed felt that additional training could help them improve their knowledge about HPV and their communication with patients. Further research is needed with patients to explore what being diagnosed with HPV-related head and neck cancer means for them.

Article link:
Dodd R.H; Marlow L. and Waller J. Discussing a diagnosis of human papillomavirus oropharyngeal cancer with patients: a qualitative study of health professionals Head and Neck
http://onlinelibrary.wiley.com/doi/10.1002/hed.23916/pdf