Laura Marlow

Attitudes towards being offered a choice of self-sampling or clinician sampling for cervical screening: A cross-sectional survey of women taking part in a clinical validation of HPV self-collection devices

Objectives Primary human papillomavirus (HPV) testing in cervical screening offers the opportunity for women to be given a choice between HPV self-sampling and traditional clinician screening. This study assessed attitudes towards a choice and anticipated future preference among women who had collected a vaginal self-sample alongside their usual cervical screen. Setting Thirty-eight general practices across five areas in England. Methods Overall, 2323 women (24–65 years; response rate: 48%) completed a survey after collecting a self-sample and having a clinician screen at their GP practice. We asked which test they preferred and assessed attitudes to being offered a choice. We explored age, education, ethnicity and screening experience as predictors of attitudes towards a choice and anticipated future choice. Results Most participants felt they would like a choice between self-sampling and clinician screening (85%) and thought this would improve screening for them (72%). However, 23% felt it would be difficult to choose, 15% would worry about making a choice, and nearly half would prefer a recommendation (48%). Compared with women with degree-level education, those with fewer qualifications were more likely to say they would worry about having a choice or would not want a choice (p < 0.001). The majority said they would choose to self-sample at home if offered a choice in the future (69%; n = 1602/2320). Conclusions Self-sampling is likely to be popular, but offering a choice could cause worry for some people and many would prefer a recommendation. Supporting people to make a choice will be important, particularly for those with lower levels of education.

Experiences of Self‐Sampling and Future Screening Preferences in Non‐Attenders Who Returned an HPV Vaginal Self‐Sample in the YouScreen Study: Findings From a Cross‐Sectional Questionnaire

ABSTRACTBackgroundWe assessed experiences of human papillomavirus (HPV) vaginal self‐sampling and future screening preferences in an ethnically and socio‐economically diverse group of women overdue for cervical screening.Setting and ParticipantsA postal questionnaire was embedded in the YouScreen self‐sampling trial in England: 32.5% (2712/8338) of kit completers returned the survey. Kit non‐completers were encouraged to return a questionnaire, but no responses were received. Participants were ethnically diverse (40.3% came from ethnic minority backgrounds), and 59.1% came from the two most deprived quintiles. Differences in confidence in kit completion, trust in the test results and intention to attend a follow‐up test if HPV‐positive were evaluated using Pearson's χ2 analyses. Binary logistic regression models explored predictors of a future screening choice and preferences for urine versus vaginal self‐sampling.ResultsMost kit‐completers reported high confidence in self‐sampling (82.6%) and high trust in the results (79.9%), but experiences varied by ethnicity and screening status. Most free‐text comments were positive but some reported difficulties using the device, pain or discomfort. Most women would opt for self‐sampling in the future (71.3% vs. 10.4% for a clinician‐taken test) and it was more often preferred by ethnic minority groups, overdue screeners and never attenders. Urine self‐tests were preferred to vaginal tests (41.9% vs. 15.4%), especially among women from Asian, Black or Other Ethnic backgrounds.ConclusionsKit‐completers were confident, found the test easy to complete, and trusted the self‐sample results. However, experiences varied by ethnic group and some women highlighted difficulties with the kit. Most women would prefer self‐sampling in the future, but it was not a universal preference, so offering a choice will be important.Patient or Public ContributionWe did not have direct patient and public involvement and engagement (PPIE) in the questionnaire design. However, patients and public representatives did input into the design of the YouScreen trial and reviewed the wider study materials (e.g. participant information sheet).Trial RegistrationThis questionnaire study was embedded in the YouScreen trial. The protocol for the YouScreen trial is available at https://www.isrctn.com/ISRCTN12759467. The National Institute for Health Research 43 Clinical Research Network (NIHR CRN) Central Portfolio Management System (CPMS) ID is 4441934.

Patterns of anxiety and distress over 12 months following participation in HPV primary screening

ObjectivesMany countries are now using primary human papillomavirus (HPV) testing for cervical screening, testing for high-risk HPV and using cytology as triage. An HPV-positive result can have an adverse psychological impact, at least in the short term. In this paper, we explore the psychological impact of primary HPV screening over 12 months.MethodsWomen were surveyed soon after receiving their results (n=1133) and 6 (n=762) and 12 months (n=537) later. Primary outcomes were anxiety (Short-Form State Anxiety Inventory-6) and distress (General Health Questionnaire-12). Secondary outcomes included concern, worry about cervical cancer and reassurance. Mixed-effects regression models were used to explore differences at each time point and change over time across four groups according to their baseline result: control (HPV negative/HPV cleared/normal cytology and not tested for HPV); HPV positive with normal cytology; HPV positive with abnormal cytology; and HPV persistent (ie, second consecutive HPV-positive result).ResultsWomen who were HPV positive with abnormal cytology had the highest anxiety scores at baseline (mean=42.2, SD: 15.0), but this had declined by 12 months (mean=37.0, SD: 11.7) and was closer to being within the ‘normal’ range (scores between 34 and 36 are considered ‘normal’). This group also had the highest distress at baseline (mean=3.3, SD: 3.8, scores of 3+ indicate case-level distress), but the lowest distress at 12 months (mean=1.9, SD: 3.1). At 6 and 12 months, there were no between-group differences in anxiety or distress for any HPV-positive result group when compared with the control group. The control group were less concerned and more reassured about their result at 6 and 12 months than the HPV-positive with normal cytology group.ConclusionsOur findings suggest the initial adverse impact of an HPV-positive screening result on anxiety and distress diminishes over time. Specific concerns about the result may be longer lasting and efforts should be made to address them.

Testing the content for a targeted age‐relevant intervention to promote cervical screening uptake in women aged 50–64 years

Objectives Low uptake of cervical screening in women in their 50s and 60s leaves them at elevated risk of cancer in older age. An age‐targeted intervention could be an effective way to motivate older women to attend cervical screening. Our primary objective was to test the impact of different candidate messages on cervical screening intention strength. Design A cross‐sectional online survey with randomized exposure to different candidate messages. Methods Women aged 50–64 years who were not intending to be screened when next invited were recruited through an online panel. Those meeting the inclusion criteria ( n  = 825) were randomized to one of three groups: (1) control group, (2) intervention group 1, (3) intervention group 2. Each intervention group saw three candidate messages. These included a descriptive social norms message, a diagram illustrating the likelihood of each possible screening outcome, a response efficacy message, a risk reduction message and an acknowledgement of the potential for screening discomfort. We tested age‐targeted versions (vs. generic) of some messages. The primary outcome was screening intention strength. Results After adjusting for baseline intention, social norms ( p  = .425), outcome expectancy ( p  = .367), risk reduction ( p  = .090), response efficacy ( p  = .136) and discomfort acknowledgement messages ( p  = .181) had no effect on intention strength. Age‐targeted messages did not result in greater intention than generic ones. Conclusions There was no evidence that a single message used to convey social norms, outcome expectancy, risk reduction or response efficacy had an impact on intention strength for older women who did not plan to be screened in future.

Information needs among women taking part in primary HPV screening in England: a content analysis

Objectives Introducing primary human papillomavirus (HPV) testing to cervical screening programmes means changes to the results women receive. We explored additional information needs among women undergoing HPV primary screening. Design Women were sent a postal questionnaire shortly after receiving their results and 6 and 12 months later. Each questionnaire asked if women had any unanswered questions about cervical screening or HPV testing. Free-text responses constituted the data. Themes were identified using content analysis. Setting National Health Service (NHS) Cervical Screening Programme, England. Participants 381 women who recorded one or more free-text responses. Results The most common theme represented women’s emotional responses and attempts to understand their results. This theme was raised by 45% of women overall, but was as high as 59% in the HPV cleared group. General questions about the cause and epidemiology of HPV were raised by 38% of women and were more common among those testing HPV positive with normal cytology (52%). Questions about the purpose and procedure for HPV testing were most common among HPV-negative women (40%, compared with 16%–24% of the other results groups). Questions about future implications of test results were raised by 19% of women, and this theme was most common among those with persistent HPV. Conclusions Despite provision of information alongside screening invitations, women can still have unanswered questions following receipt of their results. Details about the epidemiology of HPV and why cervical screening procedures are changing should be included with screening invitations. Some results groups may benefit from additional tailored information with their results letter.

Exploring reasons for variations in anxiety after testing positive for human papillomavirus with normal cytology: a comparative qualitative study

AbstractObjectiveTo explore reasons for variations in anxiety in women testing positive for human papillomavirus (HPV) with normal cytology at routine HPV primary cervical cancer screening.MethodsIn‐depth interviews were conducted with 30 women who had tested HPV‐positive with normal cytology, including 15 with low‐to‐normal anxiety and 15 with high anxiety. Data were analysed using Framework Analysis to compare themes between low and high anxiety groups.ResultsSeveral HPV‐related themes were shared across anxiety groups, but only highly anxious women expressed fear and worry, fatalistic cognitions about cancer, fertility‐related cognitions, adverse physiological responses and changes in health behaviour(s). In comparison to those with low anxiety, women with high anxiety more strongly voiced cognitions about the 12‐month wait for follow‐up screening, relationship infidelity, a lower internal locus of control and HPV‐related symptom attributions.ConclusionsReceiving an HPV‐positive with normal cytology result related to various emotional, cognitive, behavioural and physiological responses; some of which were specific to, or more pronounced in, women with high anxiety. If our observations are confirmed in hypothesis‐driven quantitative studies, the identification of distinct themes relevant to women experiencing high anxiety can inform targeted patient communications and HPV primary screening implementation policy.

Psychosexual distress following routine primary human papillomavirus testing: a longitudinal evaluation within the English Cervical Screening Programme

ObjectiveTo assess psychosexual distress over a 12‐month period among women receiving different human papillomavirus (HPV) and cytology results in the context of the English HPV primary screening pilot.DesignLongitudinal, between‐group study.SettingFive sites in England where primary HPV testing was piloted.PopulationWomen aged 24–65 years (n = 1133) who had taken part in the NHS Cervical Screening Programme.MethodsWomen were sent a postal questionnaire soon after receiving their screening results (baseline) and 6 and 12 months later. Data were analysed using linear regression models to compare psychosexual outcomes between groups receiving six possible combinations of HPV and cytology screening results, including a control group with normal cytology and no HPV test.Main outcome measuresPsychosexual distress, assessed using six items from the Psychosocial Effects of Abnormal Pap Smears Questionnaire (PEAPS‐Q).ResultsAt all time points, there was an association between screening result group and psychosexual distress (all P < 0.001). At baseline, mean psychosexual distress score (possible range: 1–5) was significantly higher among women with HPV and normal cytology (B = 1.15, 95% CI 0.96–1.34), HPV and abnormal cytology (B = 1.02, 95% CI: 0.78–1.27) and persistent HPV (B = 0.90, 95% CI 0.70–1.10) compared with the control group (all P < 0.001). At the 6 and 12 month follow ups the pattern of results were similar, but coefficients were smaller.ConclusionsOur findings suggest receiving an HPV‐positive result can cause psychosexual distress, particularly in the short‐term. Developing interventions to minimise the psychosexual burden of testing HPV‐positive will be essential to avoid unnecessary harm to the millions of women taking part in cervical screening.Tweetable abstractReceiving an HPV‐positive result following primary HPV testing can cause psychosexual distress, particularly in the short‐term.

Emotional response to testing positive for human papillomavirus at cervical cancer screening: a mixed method systematic review with meta-analysis

Tens-of-millions of women every year test positive for human papillomavirus (HPV) at routine cervical screening. We performed a mixed-methods systematic review using a results-based convergent design to provide the first comprehensive overview of emotional response to testing positive for HPV (HPV+). We mapped our findings using the cognitive behavioural framework. Six electronic databases were searched from inception to 09-Nov-2019 and 33 papers were included. Random-effects meta-analyses revealed that HPV+ women with abnormal or normal cytology displayed higher short-term anxiety than those with normal results (MD on State-Trait Anxiety Inventory = 7.6, 95% CI: 4.59-10.60 and MD = 6.33, CI: 1.31-11.35, respectively); there were no long-term differences. Psychological distress (general/sexual/test-specific) was higher in HPV+ women with abnormal cytology in the short-term and long-term (SMD = 0.68, CI: 0.32-1.03 and SMD = 0.42, CI: 0.05-0.80, respectively). Testing HPV+ was also related to disgust/shame, surprise and fear about cancer. Broadly, adverse response related to eight cognitive constructs (low control, confusion, cancer-related concerns, relationship concerns, sexual concerns, uncertainty, stigma, low trust) and six behavioural constructs (relationship problems, social impact, non-disclosure of results, idiosyncratic prevention, indirect clinical interaction, changes to sexual practice). Almost exclusive use of observational and qualitative designs limited inferences of causality and conclusions regarding clinical significance.

Increasing the perceived relevance of cervical screening in older women who do not plan to attend screening

ObjectivesUptake of cervical screening among women aged 50–64 years is declining. Not feeling at risk because of current sexual behaviour is a reason some older women give for not being screened. We hypothesised that explaining the long interval between acquiring human papillomavirus (HPV) and developing cervical cancer would increase the relevance of screening in older women.MethodsWomen aged 50–64 years (n=597) who did not intend to go for screening were recruited through an online panel and randomised to one of three information conditions:cause only(basic information about HPV and cervical cancer),cause with basic timeline(also read a sentence describing the long interval between acquiring HPV and developing cervical cancer) andcause with explicit timeline(read the same as the timeline group alongside an explanation of what this means for older women). Perceived risk of cervical cancer, screening intention strength and understanding of HPV were assessed preinformation and postinformation exposure.ResultsInformation condition was significantly associated with risk perceptions and intention strength postintervention (F(2,593)=6.26, p=0.002 and F(2,593)=4.98, p=0.007 respectively). Women in thecause with explicit timelinecondition were more likely to increase their risk perceptions and intention strength compared withcause only(24% vs 9% and 25% vs 13% for risk perceptions and intention, respectively). In thecause with explicit timelinegroup, women with 4–10 lifetime partners had higher odds of increasing their perceived risk and intention strength postintervention compared with those with 0–1 partners (OR=2.27, 95% CI 1.01 to 5.12 and OR=3.20, 95% CI 1.34 to 7.67, respectively).ConclusionsProviding a clear explanation that decouples women’s perceived cervical cancer risk from their current sexual behaviour has the potential to increase perceived risk of cervical cancer and intentions to be screened among older women. Providing women with a clear cognitive representation of the aetiology of cervical cancer may be one approach to increasing screening uptake.

Exploring the psychosexual impact and disclosure experiences of women testing positive for high‐risk cervical human papillomavirus

Abstract Objectives To examine the psychosexual impact and disclosure experiences of women testing HPV‐positive following cervical screening. Design In‐depth semi‐structured interviews. Methods Interviews were conducted with 21 women of screening age (i.e. those aged 24–65 years) in England who self‐reported testing HPV‐positive in the context of cervical screening in the last 12 months. Data were analysed using Framework Analysis. Results The sexually transmitted nature of HPV, and aspects relating to the transmission of HPV and where their HPV infection had come from, had an impact on women's current, past and future interpersonal and sexual relationships. Most women had disclosed their HPV infection to others, however the factors influencing their decision, and others' reactions to disclosure differed. The magnitude and extent of psychosexual impact was influenced by how women conceptualized HPV, their understanding of key aspects of the virus, concerns about transmitting HPV and having a persistent HPV infection. Conclusions Increasing knowledge of key aspects of HPV, such as its high prevalence and spontaneous clearance, and the differences between HPV and other STIs, may increase women's understanding of their screening result and reduce any negative psychosexual consequences of testing HPV‐positive. Referring to HPV as an infection that is passed on by skin‐to‐skin contact during sexual activity, rather than an STI, may help to lessen any psychosexual impact triggered by the STI label.

Acceptability of extending HPV-based cervical screening intervals from 3 to 5 years: an interview study with women in England

Objectives The introduction of primary Human Papillomavirus (HPV) testing in the National Health Service (NHS) Cervical Screening Programme in England means the screening interval for 25–49 years can be extended from 3 to 5 years. We explored women’s responses to the proposed interval extension. Methods We conducted semi-structured phone/video interviews with 22 women aged 25–49 years. Participants were selected to vary in age, socioeconomics and screening history. We explored attitudes to the current 3-year interval, then acceptability of a 5-year interval. Interviews were transcribed verbatim and analysed using framework analysis. Results Attitudes to the current 3-year interval varied; some wanted more frequent screening, believing cancer develops quickly. Some participants worried about the proposed change; others trusted it was evidence based. Frequent questions concerned the rationale and safety of longer intervals, speed of cancer development, the possibility of HPV being missed or cell changes occurring between screens. Many participants felt reassured when the interval change was explained alongside the move to HPV primary screening, of which most had previously been unaware. Conclusions Communication of the interval change should be done in the context of broader information about HPV primary screening, emphasising that people who test negative for HPV are at lower risk of cell changes so can safely be screened every 5 years. The long time needed for HPV to develop into cervical cancer provides reassurance about safety, but it is important to be transparent that no screening test is perfect.

Self-sampling for cervical screening offered at the point of invitation: A cross-sectional study of preferences in England

Objectives This study assessed preferences for human papillomavirus (HPV) self-sampling if offered as an alternative to clinician-based screening at the point of invitation for cervical screening. Setting and Methods An online questionnaire was completed by screening-eligible women living in England (n = 3672). Logistic regressions explored associations between demographic characteristics and screening preferences, stratified by previous screening attendance. Reasons for preferences were also assessed. Results Half of participants (51.4%) intended to choose self-sampling, 36.5% preferred clinician screening, 10.5% were unsure, and <2% preferred no screening. More irregular and never attenders chose self-sampling, compared with regular attenders (71.1% and 70.1% vs. 41.0% respectively). Among regular attenders, self-sampling was preferred more frequently by the highest occupational grade, older and lesbian, gay and bisexual women, and those with experience of blood self-tests. In the irregular attender group, older women and those with experience of blood self-tests were more likely to choose self-sampling. In ‘never attenders’, self-sampling was less popular in ethnic minority groups. Conclusions If offered a choice of screening, around half of women in England may choose self-sampling, but a substantial proportion would still opt for clinician screening. Screening providers will need to manage a high take-up of self-sampling if many regular attenders switch to self-sampling.

Awareness and knowledge about HPV and primary HPV screening among women in Great Britain: An online population-based survey

Objectives Human papillomavirus (HPV) primary testing for cervical screening is being implemented around the world. We explored HPV awareness, and knowledge about primary screening in Great Britain (England, Scotland and Wales), where it has been in place for several years, ahead of extended screening intervals being implemented in England. Setting/Methods Women aged 18–70 ( n = 1995) were recruited by YouGov from their online panel in August 2022. The weighted sample ( n = 1930) was population-representative by age, region, education and social grade. We measured HPV awareness, knowledge (excluding those unaware of HPV) using eight true/false items, and understanding of the role of HPV testing in cervical screening. Results Overall, 77.6% (1499/1930) of women were aware of HPV. When asked to identify the statement describing how cervical screening works, only 12.2% (236/1930) correctly selected the statement reflecting HPV primary screening (13.5% (194/1436) in screening-eligible women). Excluding those unaware of HPV, most participants had heard about the virus in the context of cervical screening (981/1596; 61.5%) or HPV vaccination (1079/1596; 67.6%). Mean knowledge score was 3.7 out of 8 (SD = 2.2) in this group. Most knew that an HPV-positive result does not mean a woman will definitely develop cervical cancer (1091/1499; 72.8%) but far fewer were aware of the long timeline for HPV to develop into cervical cancer (280/1499; 18.7%). Conclusions Only three-quarters of women in Britain are aware of HPV, and knowledge of primary screening is very low, even among screening-age women. This points to continued need for awareness-raising campaigns to ensure informed choice about screening and mitigate public concern when screening intervals are extended.

The impact of age‐relevant and generic infographics on knowledge, attitudes and intention to attend cervical screening: A randomized controlled trial

Abstract Objectives Cervical screening uptake in England is falling. Infographics could strengthen intention to attend, increase positive attitudes and improve knowledge. Age targeting could improve these outcomes further. We tested the impact of generic and age‐targeted infographics. Design A randomized controlled trial using an age‐stratified, parallel‐group design. Methods Women aged 25–64 ( n  = 2095) were recruited through an online panel and randomized to see one of the three infographics. We tested: (i) impact of a generic cervical screening infographic compared to a control infographic on an unrelated topic with all screening age women and (ii) impact of an age‐targeted infographic compared to a generic cervical screening infographic with older women (50–64 years). Intentions, knowledge and attitudes were measured. Results Women aged 25–64 years who viewed the generic infographic had significantly higher intentions [ F (1, 1513) = 6.14, p  = .013,  = .004], more accurate beliefs about the timeline of cervical cancer development (OR: 5.18, 95% CI: 3.86–6.95), more accurate social norms (OR: 3.03, 95% CI: 2.38–3.87) and more positive beliefs about screening benefits (OR: 2.23, 95% CI: 1.52–3.28) than those viewing the control infographic. In the older age group, there was no significant difference in intention between those viewing the generic versus age‐targeted versions [ F (1, 607) = .03, p  = .853,  < .001], but the age‐targeted version was more engaging [ F (1, 608) = 9.41, p  = .002,  = .015]. Conclusions A cervical screening infographic can result in more positive attitudes and better knowledge and may have a small impact on intentions. Although age targeting did not affect intention, it had a positive impact on engagement and may therefore be useful in encouraging women to read and process materials.