Award Title: HPV testing in cervical cancer screening: using behavioural science to understand attendance and anxiety
Funder: Department of Health and Social Care

Abstract: Background: The NHS Cervical Screening Programme (NHSCSP) is rolling out human papillomavirus (HPV) testing as the primary test across England, meaning that all women attending screening will soon find out their HPV results. With changes to the protocol for screening, it is extremely important that psychology and behavioural science informs NHSCSP information materials and wording in test results letters. This is to ensure that women understand their results, are not unnecessarily anxious and re-attend their next screening appointment. This is particularly relevant for women who test positive for HPV with normal cytology, as it is anticipated that this will be a complex result to understand and that some women in this group may display heightened anxiety. Women in this group will be recalled to screening at 12 months rather than 3 years, and it is critical that these women re-attend in order for the NHSCSP to achieve sensitivity gains of switching to HPV primary testing.Aims: This DRF will be carried out in the context of HPV primary testing in the NHSCSCP. It aims to identify demographic and psychological predictors of anxiety and of screening re-attendance among women testing positive for HPV with normal cytology.Methods: Four research projects are proposed which will directly inform a fifth applied outputs project. Project 1 will be a systematic review to consider how women react to testing positive for HPV in the context of cervical screening. Project 2 will involve analysis of existing data from a cross-sectional survey (~N= 673) considering differences in anxiety, distress and intention to re-attend between women with different test results in NHSCSP HPV primary screening. Project 3 will be a cross-sectional survey of women testing HPV positive with normal cytology results to consider theoretically driven predictors of anxiety and attendance at screening. Project 4 will be a qualitative study to gain in-depth insights into how women with HPV positive/normal cytology view their results and to understand their information needs. Project 5 will inform and develop NHSCSP information materials and test result letters, guided by results from projects 1-4, PPI and collaborator input.Dissemination and Impact: This DRF will be extremely timely in providing the NHSCSP with evidence which can be used to improve patient outcomes, as HPV primary testing roll-out will start across England in 2019. On completion of this DRF, the NHSCSP will be able to improve existing test result letters and HPV information materials, and incorporate a new leaflet into the programme specifically for women who test HPV positive with normal cytology. All materials resulting from this DRF will help ensure information clarity, reduce unnecessary patient anxiety and maximise patient re-attendance at screening.

Lay Abstract: BackgroundHuman papillomavirus (HPV) is a common sexually transmitted infection. HPV causes nearly all cervical cancers. There are around 3,000 new cases of cervical cancer every year in the UK.The NHS Cervical Screening Programme (NHSCSP) aims to prevent cervical cancer by looking for abnormal cells in the cervix and removing them before they turn into cancer. The NHSCSP will soon test all cervical screening samples for HPV before deciding whether to look for abnormal cell changes. This is called HPV primary testing and will soon be rolled out across England. This means that all women attending cervical screening will learn their HPV test results through letters delivered to their home. The results letters will tell women whether they are HPV positive or HPV negative, as well as whether they have any abnormal cell changes.It is very important that psychological research helps decide what NHSCSP results letters and information leaflets say. We know that knowledge about HPV and its connection to cervical cancer is poor amongst women in the UK. We also know that some women can get upset, confused and/or experience stigma after testing positive for HPV, partly because of it being sexually transmitted. Therefore, the wording and information in NHSCSP letters needs to make sense and be clear so that women correctly understand their risk of getting cervical cancer. It is also very important that women are not worried about their results if they do not need to be.In HPV primary testing, one group of women who might especially struggle to understand their screening results is those who test positive for HPV but have no abnormal cell changes. This is because they will find out they have HPV, but they will not get invited to screening again for another 12 months and will not get any treatment. This is because although HPV puts them at higher risk of getting cervical cancer, without any abnormal cell changes it is very unlikely that they will get cervical cancer within 12 months. It is likely that their immune system will get rid of HPV in this time. However, this can be complicated for women to understand and difficult for the NHSCSP to know how to communicate in letters. We think that some women in this group may not understand these test results. It is important that these women are not too worried or upset about their test results, and they come back to cervical screening again in 12 months.Doctoral Research Fellowship:I aim to do research which will explore how women understand and react to being told they are HPV positive with no abnormal cell changes. I want to understand what things are most important in making sure that these women are not very upset (anxious) and that they attend their next screening appointment in 12 months. The main focus of this work is to help decide what information should go into NHSCSP test results letters, and to make a new information leaflet for women in this group which can be posted along with their letters. To do this, I will do five projects: Review previous research to understand how women react to testing positive for HPV in the context of cervical screening. Look at questionnaire answers from an existing survey of women who have taken part in HPV primary testing to see if those with HPV/no abnormal cells are more upset (anxious and distressed) compared to women with other test results. Invite women with HPV/no abnormal cells to complete a survey which asks them questions about how they understand their results and what they think of cervical screening. I will then use statistics to work out which things make them more/less anxious and more likely/less likely to attend screening again (e.g. certain beliefs about HPV might make them more anxious). Do interviews with women with HPV/no abnormal cells to find out in-depth information about how they understand their results and what would be helpful to include in the NHSCSP letters and leaflets. Use all the information from projects 1-4 to make a new information leaflet to be included alongside results letters for women with HPV positive/no abnormal cells. Also, where necessary, help change the wording of existing NHSCSP general HPV information leaflets and letters.

Research Activity Codes: 4.1 DISCOVERY AND PRECLINICAL TESTING OF MARKERS AND TECHNOLOGIES
Health Categories: CANCER AND NEOPLASMS;INFECTION