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UCL Institute of Epidemiology and Health Care
Research Department of Behavioural Science and Health

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Understanding anxiety and attendance at HPV primary cervical screening

Background for the study

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 it will be rolled out across England from 2019. 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 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 (normal cytology). 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. Although HPV puts them at higher risk of getting cervical cancer, without any abnormal cell changes it is extremely unlikely that they will get cervical cancer within 12 months. It is likely that their immune system will get rid of HPV on its own. 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.

Research projects and information for potential participants

We are conducting two main research projects to explore the psychological impact of receiving a HPV positive with normal cytology test result:

  1. A cross-sectional survey study to identify psychological predictors of anxiety and attendance in women testing HPV positive with normal cytology, with a sub-study built in to test whether the use of behavioural science in cover letters influences response rate.
  2. An interview study to understand anxiety and beliefs in women testing HPV positive with normal cytology.

In order to invite the people to take part in our study, the NHS has agreed to pass on names and addresses of some patients to a secure printing and mailing company (CHP Docmail Ltd). CHP Docmail Ltd complies with the Data Protection Act (1998) and Information Governance guidelines to make sure these details are kept confidential - they also destroy these details within 30 days of receiving them. The reason for this is so that CHP Docmail Ltd can post out invitation packs to selected patients who have taken part in HPV Primary Screening - this will include a very small number of women from Manchester University NHS Foundation Trust and London North West University Healthcare NHS Trust. When women receive this invitation pack, they can then decide whether they want to take part in the study. If they do, they need to complete a consent form and questionnaires, and post these directly to UCL using a pre-paid envelope.

If you do not want the NHS to pass on your name and address to CHP Docmail Ltd only for the purposes of inviting you to take part in this research, you can opt-out by contacting your local NHS trust (details at the end of this page). This is only relevant if you live in one of the two NHS trusts listed, and if you are due for cervical screening in 2019 or 2020. You can quote the name of this study (“understanding anxiety and attendance at HPV primary cervical screening”) and tell the relevant person that you would like to opt-out. This will not affect you medical or legal rights.

The contacts details for the two NHS areas are:

• London North West Healthcare NHS Trust: David Smith on davidsmith2@nhs.net or 020 8869 3313.

• Central Manchester University Hospital NHS Foundation Trust: Janet Parker on janet.parker@mft.nhs.uk or 0161 701 0228.

If you would like more information on the study in general, please contact Emily McBride on e.mcbride@ucl.ac.uk or 0207 679 1940, or Professor Jo Waller on j.waller@ucl.ac.uk or 0207 679 5958. UCL will not know any of your personal details unless you choose to take part, so we will not be able to opt you out (only your NHS trust can do this). You do not have to tell UCL your name or details if you want to contact us to discuss the study.

This research is funded by a National Institute for Health Research (NIHR) fellowship awarded to Emily McBride, with collaborators at Public Health England (PHE) and the National Health Service (NHS). This website presents independent research funded by the NIHR. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care. Health Research Authority (HRA) approval was granted on 08/01/2019 (Research Ethics Committee reference: 18/EM/0227, Confidentiality Advisory Group reference: 18/CAG/0118, and IRAS reference 236982). This project has been active since October 2018, and will continue until December 2020.