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.

BACKGROUND: We 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 PARTICIPANTS: A 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. RESULTS: Most 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. CONCLUSIONS: Kit-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 CONTRIBUTION: We 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 REGISTRATION: This 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.

OBJECTIVES: Many 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. METHODS: Women 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). RESULTS: Women 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. CONCLUSIONS: Our 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.

Distinct Illness Representation Profiles Are Associated With Anxiety in Women Testing Positive for Human Papillomavirus.

BACKGROUND: Testing positive for human papillomavirus (HPV) at cervical cancer screening has been associated with heightened anxiety. To date, the cognitive determinants of heightened anxiety remain unclear, making it difficult to design effective interventions. PURPOSE: This study investigated latent illness representation profiles in women testing positive for HPV with no abnormal cells (normal cytology) and explored associations between these profiles and anxiety. METHODS: Women aged 24-66 (n = 646) who had tested HPV-positive with normal cytology at routine HPV primary screening in England completed a cross-sectional survey shortly after receiving their result. RESULTS: Latent profile analysis identified three distinct profiles of illness representations (termed "adaptive," "negative," and "negative somatic"), which differed significantly in their patterns of illness perceptions. Hierarchal linear regression revealed that these latent illness representation profiles accounted for 21.8% of the variance in anxiety, after adjusting for demographic and clinical characteristics. When compared with adaptive representations (Profile 1), women with negative representations (Profile 2) and negative somatic representations (Profile 3) had significantly higher anxiety, with clinically meaningful between-group differences (mean difference [MD] = 17.26, confidence interval [CI]: 14.29-20.22 and MD = 13.20, CI: 9.45-16.96 on the S-STAI-6, respectively). CONCLUSION: The latent illness representation profiles identified in this study provide support for the role of negative beliefs contributing to anxiety in women testing HPV-positive with normal cytology. Characteristics specific to subgroups of highly anxious women (Profiles 2 and 3) could be used by policymakers to target information in routine patient communications (e.g., test result letters) to reduce unnecessary burden. Future research should adopt longitudinal designs to understand the trajectory of illness representations from HPV diagnosis through to clearance versus persistence.

Do age-targeted messages increase cervical screening intentions in women aged 50-64 years with weak positive intentions? A randomised control trial in Great Britain.

Over 20% of women aged 50-64 in Britain have not attended cervical screening within the recommended 5-year interval. The aim of the present study was to investigate the impact of five messages, informed using strategies from the Behaviour Change Wheel, on strength of intention to attend cervical screening in women aged 50-64 with weak positive intentions to be screened when next invited. Women were randomised (2:2:1), into one of two intervention groups or a control group. The control group saw basic information about cervical screening. Intervention group 1 saw a social norms message and an outcome expectancy message. Intervention group 2 saw a risk reduction message and a response efficacy message. There was further randomisation within the two intervention groups (1:1) to test the effectiveness of message framing and age-targeted information. Lastly, both intervention groups were randomised (1:1) to see a message acknowledging the possible discomfort associated with screening and offering support, or the support message only. Data were included from 475 women, collected using an online survey in March 2022. Adjusting for baseline intention, social norms (p = .84), outcome expectancy (p = .51), risk reduction (p = .19), response efficacy (p = .23) and discomfort acknowledgement messages (p = .71) had no effect on intention strength. However, there was a significant increase in intention after reading multiple messages. These results suggest that although no single message has a significant impact on intentions, when combined, they may act together to increase intention strength. Further research will understand the impact of these messages when combined in information materials.

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

OBJECTIVE: To explore reasons for variations in anxiety in women testing positive for human papillomavirus (HPV) with normal cytology at routine HPV primary cervical cancer screening. METHODS: In-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. RESULTS: Several 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. CONCLUSIONS: Receiving 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.

Improving postal survey response using behavioural science: a nested randomised control trial.

BACKGROUND: Systematic reviews have identified effective strategies for increasing postal response rates to questionnaires; however, most studies have isolated single techniques, testing the effect of each one individually. Despite providing insight into explanatory mechanisms, this approach lacks ecological validity, given that multiple techniques are often combined in routine practice. METHODS: We used a two-armed parallel randomised controlled trial (n = 2702), nested within a cross-sectional health survey study, to evaluate whether using a pragmatic combination of behavioural science and evidenced-based techniques (e.g., personalisation, social norms messaging) in a study invitation letter increased response to the survey, when compared with a standard invitation letter. Participants and outcome assessors were blinded to group assignment. We tested this in a sample of women testing positive for human papillomavirus (HPV) at cervical cancer screening in England. RESULTS: Overall, 646 participants responded to the survey (response rate [RR] = 23.9%). Logistic regression revealed higher odds of response in the intervention arm (n = 357/1353, RR = 26.4%) compared with the control arm (n = 289/1349, RR = 21.4%), while adjusting for age, deprivation, clinical site, and clinical test result (aOR = 1.30, 95% CI: 1.09-1.55). CONCLUSION: Applying easy-to-implement behavioural science and evidence-based methods to routine invitation letters improved postal response to a health-related survey, whilst adjusting for demographic characteristics. Our findings provide support for the pragmatic adoption of combined techniques in routine research to increase response to postal surveys. TRIAL REGISTRATION: ISRCTN, ISRCTN15113095 . Registered 7 May 2019 - retrospectively registered.

Anxiety and distress following receipt of results from routine HPV primary testing in cervical screening: The psychological impact of primary screening (PIPS) study.

We used a cross-sectional survey to examine short-term anxiety and distress in women receiving different results following routine human papillomavirus (HPV) primary testing at cervical screening. Participants were women aged 24-65 (n = 1,127) who had attended screening at one of five sites piloting HPV primary screening in England, including a control group with normal cytology who were not tested for HPV. Women completed a postal questionnaire ~2 weeks after receiving their screening result. Unadjusted mean anxiety scores ranged from 32.9 (standard deviation [SD] = 12.2) in HPV-negative women to 42.1 (SD = 14.9) in women who were HPV-positive with abnormal cytology. In adjusted analyses, anxiety was significantly higher in women testing HPV-positive with either normal cytology (mean difference [MD] = 3.5, CI: 0.6-6.4) or abnormal cytology (MD = 7.2, CI: 3.7-10.6), than the control group. Distress was slightly higher in women who tested HPV-positive with abnormal cytology (MD = 0.9, CI: 0.02-1.8), than the control group. We also found increased odds of very high anxiety in women who tested HPV-positive with normal or abnormal cytology compared to the control group. This pattern of results was only observed among women receiving their first HPV-positive result, not among women found to have persistent HPV at 12-month follow-up. Testing HPV-positive with normal cytology for the first time, is associated with elevated anxiety despite carrying very low immediate cervical cancer risk. However, receiving the same test result at 12-month early recall does not appear to be associated with higher anxiety, suggesting anxiety may normalise with repeated exposure and/or over time.

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

OBJECTIVES: Uptake 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. METHODS: Women 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) and cause 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. RESULTS: Information 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 the cause with explicit timeline condition were more likely to increase their risk perceptions and intention strength compared with cause only (24% vs 9% and 25% vs 13% for risk perceptions and intention, respectively). In the cause with explicit timeline group, 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). CONCLUSIONS: Providing 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.

Cancer stigma and cancer screening attendance: a population based survey in England.

BACKGROUND: Cancer-related stigma attracts considerable research interest, but few studies have examined stigmatisation in the healthy population. Qualitative studies suggest that stigma can discourage people from attending cancer screening. We aimed to quantify the prevalence and socio-demographic patterning of cancer stigma in the general population and to explore its association with cancer screening attendance. METHODS: In 2016, 1916 adults aged 18-70 years took part in home-based interviews in England. Measures assessed demographic characteristics, self-reported screening uptake for cervical (n = 681), breast (n = 326) and colorectal cancer (n = 371), and cancer stigma. Cancer stigma was measured with the validated Cancer Stigma Scale which assesses six subdomains (Severity, Personal Responsibility, Awkwardness, Avoidance, Policy Opposition, and Financial Discrimination), from which a mean score was calculated. Logistic regression analyses examined the association between cancer stigma and having been screened as recommended versus not. RESULTS: Levels of cancer stigma were low, but varied across the six subdomains. Items regarding the severity of a cancer diagnosis attracted the highest levels of agreement (30-51%), followed by statements about the acceptability of making financial decisions on the basis of a cancer diagnosis such as allowing banks to refuse a mortgage (16-31%) and policy opposition statements such as not having a responsibility to provide the best possible care for cancer patients (10-17%). A similar proportion anticipated feeling awkward around someone with cancer (10-17%). Only 8-11% agreed with personal responsibility statements, such as that a person with cancer is to blame for their condition, while 4-5% of adults anticipated avoiding someone with cancer. Stigma was significantly higher in men (p < .05) and in those from ethnic minority backgrounds (p < .001). Higher cancer stigma was associated with not being screened as recommended for all three screening programmes (cervical: adjusted OR 1.59, 95% CI 1.15-2.20; breast: adjusted OR = 1.97, 95% CI 1.17-3.32; colorectal: adjusted OR = 1.59, 95% CI 1.06-2.38). CONCLUSIONS: Cancer stigma is generally low, but some aspects of stigma are more prevalent than others. Stigma is more prevalent in certain population subgroups and is negatively associated with cancer screening uptake. These benchmark findings may help track and reduce cancer stigma over time.

Ethnic differences in barriers to symptomatic presentation in primary care: A survey of women in England.

OBJECTIVE: The majority of cancers are diagnosed following a decision to access medical help for symptoms. People from ethnic minority backgrounds have longer patient intervals following identification of cancer symptoms. This study quantified ethnic differences in barriers to symptomatic presentation including culturally specific barriers. Correlates of barriers (eg, migration status, health literacy, and fatalism) were also explored. METHODS: A cross-sectional survey of 720 White British, Caribbean, African, Indian, Pakistani, and Bangladeshi women aged 30 to 60 (n = 120/group) was carried out in England. Barrier items were taken from the widely used cancer awareness measure; additional culturally specific barriers to symptomatic presentation were included following qualitative work (11 barriers in total). Migration status, health literacy, and fatalism were included as correlates to help-seeking barriers. RESULTS: Ethnic minority women reported a higher number of barriers (P < .001, 2.6-3.8 more than White British women). Emotional barriers were particularly prominent. Women from ethnic minority groups were more likely to report "praying about a symptom" (P < .001, except Bangladeshi women) and "using traditional remedies" (P < .001, except Caribbean women). Among ethnic minority women, adult migration to the United Kingdom, low health literacy, and high fatalistic beliefs increased likelihood of reporting barriers to symptomatic presentation. For example, women who migrated as adults were more likely to be embarrassed (OR = 1.83; CI, 1.06-3.15), worry what the GP might find (OR = 1.91; CI, 1.12-3.26), and be low on body vigilance (OR = 4.44; CI, 2.72-7.23). CONCLUSIONS: Campaigns addressing barriers to symptomatic presentation among ethnic minority women should be designed to reach low health literacy populations and include messages challenging fatalistic views. These would be valuable for reducing ethnic inequalities in cancer outcomes.

The psychosexual impact of testing positive for high-risk cervical human papillomavirus (HPV): A systematic review.

OBJECTIVES: Many countries are implementing human papillomavirus (HPV)-based cervical screening due to the higher sensitivity of the test compared with cytology. As HPV is sexually transmitted, there may be psychosexual consequences of testing positive for the virus. We aimed to review the literature exploring the psychosexual impact of testing positive for high-risk cervical HPV. METHODS: MEDLINE, PsycINFO, CINAHL Plus, Web of Science, and EMBASE were searched with no date limits. We also searched the grey literature, reference lists of included articles and carried out forward citation searching. Eligible studies reported at least one psychosexual outcome among HPV-positive women. Qualitative and quantitative papers were included. We extracted data using a standardised form and carried out a quality assessment for each article. We conducted a narrative synthesis for quantitative studies and a thematic synthesis for qualitative studies. RESULTS: Twenty-five articles were included. Quantitative study designs were diverse making it difficult to determine the impact that an HPV positive result would have in the context of routine screening. The qualitative literature suggested that psychosexual concerns cover a broad range of aspects relating to women's current and past relationships, both interpersonal and sexual. CONCLUSIONS: The psychosexual impact of testing positive for high-risk cervical HPV is unclear. This review highlights the need for further research in the context of HPV-based cervical screening. As primary HPV testing is introduced more widely, it is important to understand women's responses to testing HPV positive in the cancer screening context to minimise any adverse psychosexual impact.

Psychosocial impact of human papillomavirus-related head and neck cancer on patients and their partners: A qualitative interview study.

OBJECTIVE: Increasing numbers of patients face the psychosocial challenge of a diagnosis of oropharyngeal squamous cell carcinoma (OSCC) caused by human papillomavirus (HPV). We explored the psychosocial impact of an HPV-OSCC diagnosis for patients and their partners. METHODS: In-depth interviews were conducted with patients (n = 20) and a subset of their partners (n = 12), identified through medical records at two UK hospitals. Interviews were recorded, transcribed verbatim and analysed using thematic Framework Analysis. RESULTS: Only 12/20 patients interviewed (and five partners) were aware of their HPV status and the main analysis focused on this sub-sample. In discussing the cause of their cancer, patients and their partners talked about not wanting to know; whether they disclosed the cause of their cancer to others; their reactions to being diagnosed with HPV; the prognosis information they were given and the questions they had about HPV. Most concerns were cancer-related rather than HPV-related, but some patients (n = 3) described feelings of embarrassment and perceived stigma about HPV. CONCLUSION: Some patients and partners who are told HPV is the cause of their OSCC have questions about HPV and seek further information. Concerns and uncertainties about the sexually transmitted nature of HPV need to be addressed by health professionals.

What is it about a cancer diagnosis that would worry people? A population-based survey of adults in England.

BACKGROUND: Surveys indicate quite high prevalence of cancer worry in the general population, but little is known about what it is about cancer that worries people. A better understanding of the origins of cancer worry may help elucidate previously found inconsistencies in its behavioural effect on cancer prevention, screening uptake, and help-seeking for symptoms. In this study, we explore the prevalence and population distribution of general cancer worry and worries about specific aspects of cancer previously identified. METHODS: A population-based survey of 2048 English adults (18-70 years, April-May 2016), using face-to-face interviews to assess demographic characteristics, general cancer worry and twelve sources of cancer worry (adapted from an existing scale), including the emotional, physical, and social consequences of a diagnosis. RESULTS: In general, a third of respondents (37%) never worried about cancer, 57% worried occasionally/sometimes, and 6% often/very often. In terms of specific worries, two thirds would be 'quite a bit' or 'extremely' worried about the threat to life and emotional upset a diagnosis would cause. Half would worry about surgery, radiotherapy, chemotherapy, and loss of control over life. Worries about the social consequences were less commonly anticipated: just under half would worry about financial problems or their social roles, and a quarter would be worried about effects on identity, important relationships, gender role, and sexuality. Women and younger people reported more frequent worry about getting cancer, and would be more worried about the emotional, physical, and social consequences of a cancer diagnosis (p < .001). Those from ethnic minority backgrounds reported less frequent worry about getting cancer than their white counterparts, but would be equally worried about the emotional and physical impact of a cancer diagnosis, and worried more about the social consequences of a cancer diagnosis (p < .05). CONCLUSIONS: The majority of English adults worry at least occasionally about getting cancer, and would be most worried about the emotional and physical impact of a cancer diagnosis. Distinguishing between the various worries that cancer can evoke may help inform efforts to allay undue worries in those who are deterred by them from engaging with cancer prevention and early detection.

Decision-making about cervical screening in a heterogeneous sample of nonparticipants: A qualitative interview study.

OBJECTIVE: According to the precaution adoption process model, cervical screening nonparticipants represent a heterogeneous group including those who are unaware of, unengaged with, or undecided about screening, as well as intenders and decliners. We aimed to explore beliefs about cervical screening among these different types of nonparticipant. METHODS: Semistructured interviews were carried out with women aged 26 to 65 years living in Britain (n = 29). Women were purposively sampled to represent different nonparticipant types. Interviews were transcribed verbatim, and data were analysed thematically using framework analysis. RESULTS: The salience of some barriers to screening varied between different types of nonparticipant. Bad experiences were prominent in the discussions of women who had decided not to attend, while practical barriers were more prominent among intenders. There was also some overlap between nonparticipant types. For example, many of the undecided women described not wanting to go for screening, but with less certainty than decliners. Some intenders (particularly those who had not been screened before) described not really wanting to attend but feeling they ought to. Women's views on the invitation/reminder process also varied; intenders and maintainers appreciated written reminders and general practitioner (GP) prompts but decliners sometimes perceived these as "badgering." Throughout the interviews, women described changing views on screening in the wider context of ageing and motherhood. CONCLUSIONS: The salience of screening barriers varies by nonparticipant type, offering possibilities for tailored interventions. However, the fluidity of women's stage of screening adoption might have implications for this approach to intervention design.

Variation in health beliefs across different types of cervical screening non-participants.

Understanding factors associated with different types of cancer screening non-participation will help with the development of more targeted approaches for improving informed uptake. This study explored patterns of general health beliefs and behaviour, and cancer-specific beliefs across different types of cervical screening non-participants using the Precaution Adoption Process Model (PAPM). A population-representative sample of women in Britain completed a home-based survey in 2016. Women classified as non-participants (n = 839) completed additional questions about health beliefs. Some general health beliefs and behaviours, as well as cancer-specific beliefs, were associated with particular types of non-participation. For example, those who scored higher on fatalism were more likely to be unaware of screening (OR = 1.74, 95%CI: 1.45-2.08) or unengaged with screening (OR = 1.57, CI: 1.11-2.21). Women with greater deliberative risk perceptions were less likely to be unengaged with screening (OR = 0.74 CI: 02.55-0.99) and less likely to have decided against screening (OR = 0.71, CI: 0.59-0.86). Women who had seen a general practitioner in the last 12 months were less likely to be unaware (OR = 0.49, CI: 0.35-0.69), and those reporting cancer information avoidance were more likely to be unengaged with screening (OR = 2.25, CI: 1.15-4.39). Not wanting to know whether one has cancer was the only factor associated with all types of non-participation. Interventions to raise awareness of screening should include messages that address fatalistic and negative beliefs about cancer. Interventions for women who have decided not to be screened could usefully include messages to ensure the risk of cervical cancer and the relevance and benefits of screening are well communicated.

Determinants of attitudes and beliefs toward human papillomavirus infection, cervical cancer and human papillomavirus vaccine among parents of adolescent girls in Mysore, India.

AIM: This study examined the determinants of attitudes and beliefs about human papillomavirus (HPV) infection, cervical cancer and HPV vaccine among parents of adolescent girls in Mysore, India. METHODS: A random sample of 800 parents who had at least one adolescent-aged daughter attending school were recruited for a survey. RESULTS: Most parents (n = 778; 97.3%) completed the survey. Compared to Hindus, Muslims were more likely to perceive that their daughters are susceptible to HPV infection (adjusted odds ratio [aOR]: 4.94; 95% confidence interval [CI]: 2.87, 8.49) or cervical cancer (aOR: 2.73; 95% CI: 1.55, 4.80). However, the likelihood of perceiving that daughters are susceptible to HPV infection (aOR: 0.94; 95% CI: 0.90, 0.98) or cervical cancer (aOR: 0.95; 95% CI: 0.92, 0.99) decreased with an increase in the age of the parents. Perceived severity of HPV infection (aOR: 0.36; 95% CI: 0.14, 0.97) and cervical cancer (aOR: 0.33; 95% CI: 0.15, 0.74) was lower among Muslims than Hindus. Muslims had lower odds of believing that HPV vaccine is safe (aOR: 0.47; 95% CI: 0.25, 0.89) or could protect against cervical cancer (aOR: 0.27; 95% CI: 0.16, 0.48), but were more likely to feel that HPV vaccination may cause girls to become more sexually active (aOR: 1.92; 95% CI: 1.09, 3.39). The odds of believing that HPV vaccine is effective increased with an increase in the age of the parents (aOR: 1.03; 95% CI: 1.003, 1.06). CONCLUSION: Among Indian parents, age and religion of parents are associated with parental attitudes and beliefs about the threat of HPV and cervical cancer as well as the risks and benefits of HPV vaccine.

Establishing and characterizing patient-derived xenografts using pre-chemotherapy percutaneous biopsy and post-chemotherapy surgical samples from a prospective neoadjuvant breast cancer study.

BACKGROUND: Patient-derived xenografts (PDXs) are increasingly used in cancer research as a tool to inform cancer biology and drug response. Most available breast cancer PDXs have been generated in the metastatic setting. However, in the setting of operable breast cancer, PDX models both sensitive and resistant to chemotherapy are needed for drug development and prospective data are lacking regarding the clinical and molecular characteristics associated with PDX take rate in this setting. METHODS: The Breast Cancer Genome Guided Therapy Study (BEAUTY) is a prospective neoadjuvant chemotherapy (NAC) trial of stage I-III breast cancer patients treated with neoadjuvant weekly taxane+/-trastuzumab followed by anthracycline-based chemotherapy. Using percutaneous tumor biopsies (PTB), we established and characterized PDXs from both primary (untreated) and residual (treated) tumors. Tumor take rate was defined as percent of patients with the development of at least one stably transplantable (passed at least for four generations) xenograft that was pathologically confirmed as breast cancer. RESULTS: Baseline PTB samples from 113 women were implanted with an overall take rate of 27.4% (31/113). By clinical subtype, the take rate was 51.3% (20/39) in triple negative (TN) breast cancer, 26.5% (9/34) in HER2+, 5.0% (2/40) in luminal B and 0% (0/3) in luminal A. The take rate for those with pCR did not differ from those with residual disease in TN (p = 0.999) and HER2+ (p = 0.2401) tumors. The xenografts from 28 of these 31 patients were such that at least one of the xenografts generated had the same molecular subtype as the patient. Among the 35 patients with residual tumor after NAC adequate for implantation, the take rate was 17.1%. PDX response to paclitaxel mirrored the patients' clinical response in all eight PDX tested. CONCLUSIONS: The generation of PDX models both sensitive and resistant to standard NAC is feasible and these models exhibit similar biological and drug response characteristics as the patients' primary tumors. Taken together, these models may be useful for biomarker discovery and future drug development.

Exploring human papillomavirus vaccination refusal among ethnic minorities in England: A comparative qualitative study.

OBJECTIVES: In England, uptake of human papillomavirus (HPV) vaccination to prevent HPV-related cancer is lower among girls from ethnic minority backgrounds. We aimed to explore the factors that prevented ethnic minority parents from vaccinating, compared to White British nonvaccinating parents and vaccinating ethnic minority parents. METHODS: Interviews with 33 parents (n = 14 ethnic minority non-vaccinating, n = 10 White British nonvaccinating, and n = 9 ethnic minority vaccinating) explored parents' reasons for giving or withholding consent for HPV vaccination. Data were analysed using Framework Analysis. RESULTS: Concerns about the vaccine were raised by all nonvaccinating ethnic minority parents, and they wanted information to address these concerns. External and internal influences affected parents' decisions, as well as parents' perceptions that HPV could be prevented using means other than vaccination. Reasons were not always exclusive to nonvaccinating ethnic minority parents, although some were, including a preference for abstinence from sex before marriage. Only ethnic minority parents wanted information provided via workshops. CONCLUSIONS: Ethnic differences in HPV vaccination uptake may be partly explained by concerns that were only reported by parents from some ethnic groups. Interventions to improve uptake may need to tackle difficult topics like abstinence from sex before marriage, and use a targeted format.

Experiences of cervical screening and barriers to participation in the context of an organised programme: a systematic review and thematic synthesis.

OBJECTIVE: As uptake of cervical screening continues to decline, this systematic review synthesises the qualitative literature on women's perceptions and experiences of cervical screening in the context of an organised call-recall programme, in order to understand the barriers to informed uptake. METHODS: We searched nine databases for English language peer-reviewed publications reporting on qualitative data from screening-eligible women, exploring barriers to cervical screening in countries that offer a nationally organised call-recall programme. Evidence was integrated using thematic synthesis. RESULTS: Thirty-nine papers from the UK, Australia, Sweden and Korea were included. The majority of participants had attended screening at least once. Two broad themes were identified: (a) should I go for screening? and (b) screening is a big deal. In considering whether to attend, women discussed the personal relevance and value of screening. Women who had previously attended described how it was a big deal, physically and emotionally, and the varied threats that screening presents. Practical barriers affected whether women translated screening intentions into action. CONCLUSIONS: The variation in women's understanding and perceptions of cervical screening suggests that interventions tailored to decisional stage may be of value in increasing engagement with the invitation and uptake of screening in those who wish to take part. There is also a need for further research with women who have never attended screening, especially those who remain unaware or unengaged, as their perspectives are lacking in the existing literature. © 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.