The impact of breast density notification on psychosocial outcomes in racial and ethnic minorities: A systematic review.

BACKGROUND: High breast density is an independent risk factor for breast cancer and decreases the sensitivity of mammography. This systematic review synthesizes the evidence on the impact of breast density (BD) information and/or notification on women's psychosocial outcomes among women from racial and ethnic minority groups. METHODS: A systematic search was performed in March 2023, and the articles were identified using CINHAL, Embase, Medline, and PsychInfo databases. The search strategy combined the terms "breast", "density", "notification" and synonyms. The authors specifically kept the search terms broad and did not include terms related to race and ethnicity. Full-text articles were reviewed for analysis by race, ethnicity and primary language of participants. Two authors evaluated the eligibility of studies with verification from the study team, extracted and crosschecked data, and assessed the risk of bias. RESULTS: Of 1784 articles, 32 articles published from 2003 to 2023 were included. Thirty-one studies were conducted in the United States and one in Australia, with 28 quantitative and four qualitative methodologies. The overall results in terms of breast density awareness, knowledge, communication with healthcare professionals, screening intentions and supplemental screening practice were heterogenous across studies. Barriers to understanding BD notifications and intentions/access to supplemental screening among racial and ethnic minorities included socioeconomic factors, language, health literacy and medical mistrust. CONCLUSIONS: A one-size approach to inform women about their BD may further disadvantage racial and ethnic minority women. BD notification and accompanying information should be tailored and translated to ensure readability and understandability by all women.

Main COVID-19 information sources in a culturally and linguistically diverse community in Sydney, Australia: A cross-sectional survey.

OBJECTIVE: Describe COVID-19 information-seeking experiences for culturally and linguistically diverse groups in Sydney, Australia. METHODS: Cross-sectional survey, translated into 11 languages; participants recruited from March 21 to July 9, 2021. Regression models identified factors associated with difficulty finding easy-to-understand COVID-19 information. RESULTS: Across 708 participants (88% born overseas, 31% poor English proficiency), difficulty finding easy-to-understand COVID-19 information was rated 4.13 for English (95%CI: 3.85-4.41) and 4.36 for non-English language materials (95%CI: 4.07-4.66) (1 easy to 10 hard). Participants who were older (p < 0.001), had inadequate health literacy (p < 0.001), or poor English proficiency (p < 0.001) found it harder to find easy-to-understand English-language COVID-19 information. Those who had greater difficulty finding easy-to-understand non-English COVID-19 information were younger (p = 0.004), had poor English proficiency (p < 0.001), were university-educated (p = 0.05), and had spent longer living in Australia (p = 0.001). They were more likely to rely on friends and family for COVID-19 information (p = 0.02). There was significant variation in information-seeking experiences across language groups (p's < 0.001). CONCLUSIONS: Easy-to-understand and accessible COVID-19 information is needed to meet the needs of people in culturally and linguistically diverse communities. PRACTICE IMPLICATIONS: COVID-19 communication efforts must involve working alongside these communities to leverage existing communication channels and tailor messages.

Clinicians' perspectives on diagnosing polycystic ovary syndrome in Australia: a qualitative study.

STUDY QUESTION: What are clinicians' views about the diagnosis of polycystic ovary syndrome (PCOS), and how do they handle any complexities and uncertainties in practice? SUMMARY ANSWER: Clinicians have to navigate many areas of complexity and uncertainty regarding the diagnosis of PCOS, related to the diagnostic criteria, limitations in current evidence and misconceptions surrounding diagnosis, and expressed concern about the risk and consequences of both under- and overdiagnosis. WHAT IS KNOWN ALREADY: PCOS is a complex, heterogeneous condition with many areas of uncertainty, raising concerns about both underdiagnosis and overdiagnosis. Quantitative studies with clinicians have found considerable variation in diagnostic criteria used and care provided, as well as a lack of awareness around the breadth of PCOS features and poor uptake of recommended screening for metabolic complications. Clinicians' views about the uncertainties and complexities of diagnosing PCOS have not been explored. STUDY DESIGN, SIZE, DURATION: Semi-structured telephone interviews were conducted with clinicians from September 2017 to July 2018 to explore their perceptions about the diagnosis of PCOS, including how they handle any complexities and uncertainties in practice. PARTICIPANTS/MATERIALS, SETTING, METHODS: A group of 36 clinicians (15 general practitioners, 10 gynaecologists and 11 endocrinologists) currently practicing in Australia, were recruited through advertising via professional organisations, contacting a random sample of endocrine and gynaecology teams across Australia and snowballing. Transcribed audio-recordings were analysed thematically using Framework analysis. MAIN RESULTS AND THE ROLE OF CHANCE: Clinicians expressed a range of uncertainties and complexities regarding the diagnosis of PCOS, which were organised into three areas: (i) establishing diagnosis (e.g. lack of standardisation regarding diagnostic cut-offs, risk of misdiagnosis), (ii) factors influencing the diagnostic process (e.g. awareness of limitations in evidence and consideration of the benefits and harms) and (iii) strategies for handling challenges and uncertainties (e.g. using caution and communication of uncertainties). Clinicians also varied in their concerns regarding under- and overdiagnosis. Overall, most felt the diagnosis was beneficial for women provided that it was the correct diagnosis and time was taken to assess patient expectations and dispel misconceptions, particularly concerning fertility. LIMITATIONS, REASONS FOR CAUTION: There is possible selection bias, as clinicians who are more knowledgeable about PCOS may have been more likely to participate. Clinicians' views may also differ in other countries. WIDER IMPLICATIONS OF THE FINDINGS: These findings underscore the vital need to first consider PCOS a diagnosis of exclusion and use caution before giving a diagnosis in order to reduce misdiagnosis, as suggested by clinicians in our study. Until there is greater standardisation of diagnostic criteria, more transparent conversations with women may help them understand the uncertainties surrounding the criteria and limitations in the evidence. Additionally, clinicians emphasised the importance of education and reassurance to minimise the potential harmful impact of the diagnosis and improve patient-centred outcomes. STUDY FUNDING/COMPETING INTEREST(S): The study was funded by the University of Sydney Lifespan Research Network and an NHMRC Program Grant (APP1113532). T.C. is supported by an Australian Government Research Training Program (RTP) Scholarship and a Sydney Medical School Foundation Scholarship, from the The University of Sydney, Australia. B.W.M. reports consultancy for ObsEva, Merck, Merck KGaA and Guerbet. No further competing interests exist. TRIAL REGISTRATION NUMBER: N/A.

'Your hopes can run away with your realistic expectations': a qualitative study of women and men's decision-making when undergoing multiple cycles of IVF.

STUDY QUESTION: What are the factors that contribute to the decision to continue or stop IVF treatment after multiple unsuccessful cycles? SUMMARY ANSWER: Factors contributing to the decision included external factors, such as their doctor's guidance, success rates, the outcomes of previous cycles and anecdotal stories of success, as well as emotional and cognitive drivers, including perception of success, hope and fear of regret. WHAT IS KNOWN ALREADY: Infertility affects about one in six Australian couples of reproductive age. Regarding IVF, some couples with a good prognosis drop out of treatment prematurely, whilst others continue for multiple cycles, despite limited chances of success. Little is known about what factors contribute to the decision to continue IVF after multiple failed cycles. STUDY DESIGN SIZE DURATION: Semi-structured face-to-face and telephone interviews were conducted with 22 participants. Interviews were audio-recorded, transcribed and analysed thematically using Framework analysis. PARTICIPANTS/MATERIALS SETTING METHODS: Doctors and nurses at an Australian private fertility clinic recruited individuals and/or couples who had undergone three or more complete unsuccessful cycles of IVF. MAIN RESULTS AND THE ROLE OF CHANCE: The majority of participants had decided to or were leaning towards continuing treatment. Participants expressed a range of common factors important in their decision-making, which were evident both within and across couples. For most, their doctor's advice and hope were key factors influencing their decision. Most participants expressed they would continue as long as there was a chance of success and until their doctor advised otherwise. Other factors included participants' perception of their likelihood of success, hearing anecdotal stories of success after multiple cycles, positive outcomes of previous cycles and fear of regret. LIMITATIONS REASONS FOR CAUTION: The sample was highly educated and recruited from one private Australian fertility clinic only. Many participants were also couples, which may have resulted in more homogenous data as they shared the same diagnosis for infertility and outcomes of previous cycles. Factors influencing the decision to continue or stop may differ in different sociodemographic populations and in other healthcare systems. WIDER IMPLICATIONS OF THE FINDINGS: Given the important role of the doctor's guidance and patients' own perceptions of their likelihood of success, which they tended to overestimate, it is vital that fertility specialists give accurate and transparent information regarding their likelihood of success and continue to regularly communicate this throughout the IVF journey. Anecdotal stories of success against the odds appeared to be influential in the decision to continue and underpinned unrealistic perceptions of possible success. More personalized, cumulative estimates of likelihood of success may help couples with their decision-making as well as with discussions about ending treatment or setting a limit before commencing IVF. STUDY FUNDING/COMPETING INTERESTS: The study was funded by the National Health and Medical Research Council (NHMRC) Program Grant (APP1113532). No further competing interests exist.

The benefits and harms of receiving a polycystic ovary syndrome diagnosis: a qualitative study of women's experiences.

STUDY QUESTION: What are the benefits and harms of receiving a polycystic ovary syndrome (PCOS) diagnosis in a community sample of women, including impact on psychosocial wellbeing, lifestyle choices and behaviour? SUMMARY ANSWER: Although some women benefit considerably from the diagnosis, such as through increased awareness and reassurance, women with minimal symptoms may experience more harm than benefit, including long-lasting anxiety and altered life plans. WHAT IS KNOWN ALREADY: Disease labels can validate symptoms and play a vital role in understanding and coping with illness; however, they can also cause harm by evoking illness schemas about severity and permanence. Regarding PCOS, the diagnostic criteria have expanded over time to include women with milder phenotypes (such as those without signs of androgen excess). This has occurred despite limited investigation of the benefits and harms of the diagnosis and has increased the number of women diagnosed. STUDY DESIGN SIZE DURATION: Semi-structured interviews were conducted face-to-face or by telephone with 26 participants from April-July 2018 to explore women's experiences with the diagnosis, including the benefits and harms of receiving the diagnosis and the impact on their life. PARTICIPANTS/MATERIALS SETTING METHODS: In total, 26 women in the community self-reporting a diagnosis of PCOS (reporting mild to severe symptoms) made by a medical doctor, aged 18-45 years and living in Australia were recruited through social media. Data were analysed thematically using Framework analysis. MAIN RESULTS AND THE ROLE OF CHANCE: The study identified a range of both positive and negative effects of a PCOS diagnosis in the immediate, short and long-term, which were influenced by symptom severity, expectations and experience. For women with previously unexplained and bothersome symptoms, it was a relief to receive a diagnosis, and this resulted in an increased understanding about the importance of a healthy lifestyle. By contrast, women with milder symptoms often reported feeling shocked and overwhelmed by the diagnosis, consequently experiencing anxiety about the associated long-term risks. The majority of women, regardless of symptom severity, experienced prolonged worry and anxiety about infertility, resulting for some in risk taking with contraception, unintended pregnancies, pressure to conceive early or altered life plans. With time, many women developed positive coping strategies and perceived the diagnosis to be valuable, including those who felt they had experienced minimal benefit or even harm. LIMITATIONS REASONS FOR CAUTION: PCOS diagnosis was self-reported and the sample was highly educated. WIDER IMPLICATIONS OF THE FINDINGS: Fear of infertility was salient for many women, underscoring the need for accurate information, counselling and reassurance of fertility potential. Given the risk of significant consequences, health professionals should use a tailored approach to PCOS diagnosis to increase the benefits of appropriate and timely diagnosis for women affected by significant symptoms, while reducing the harms of unnecessarily labelling healthy women for whom the benefits of a diagnosis are small. STUDY FUNDING/COMPETING INTERESTS: The study was funded by the University of Sydney Lifespan Research Network and an NHMRC Program Grant (APP1113532). B.W.M. reports consultancy for ObsEva, Merck, Merck KGaA and Guerbet. No further competing interests exist. TRIAL REGISTRATION NUMBER: N/A.

Decision-making about mammographic screening: pursuing informed choice.

For decades, persuasive techniques have been used to communicate to women about breast cancer screening with the aim of maximizing screening uptake. However, more recently this has shifted to an approach which recognizes that it is important for women to be aware of harms, such as overdiagnosis, as well as benefits of breast screening. There is a lack of consensus in the literature around whether benefits clearly outweigh harms for population-based breast cancer screening. In light of this, the gold standard for communication about breast cancer screening is now to try and support informed decision-making - that is, to help women understand both the advantages and disadvantages of screening, allowing them to make individual decisions about their screening participation that reflect their informed preferences. In this review, we summarize relevant research to identify theoretical and practical aspects of improving communication and decision-making about breast cancer screening, and discuss future implications.

Experience and psychological impact of anal cancer screening in gay, bisexual and other men who have sex with men: a qualitative study.

OBJECTIVE: Human papillomavirus-related anal cancer rates are increasing and are particularly high in gay, bisexual and other men who have sex with men (GBM/MSM), especially HIV-positive individuals. Although screening programs for high-risk populations have been advocated, concerns about possible adverse psychological consequences exist. This study aimed to investigate GBM/MSM's experience, understanding and emotional response to screening techniques for anal cancer to determine how best to minimise psychological distress in future programs. METHODS: In-depth qualitative face-to-face interviews were conducted with 21 GBM/MSM participating in the "Study of the Prevention of Anal Cancer" in Sydney, Australia, between June 2013 and June 2014. Nonrandom, purposive sampling was used to ensure heterogeneity with respect to HIV status and screening test results. Framework analysis method was used to organise the data and identify emerging themes. RESULTS: Knowledge about anal cancer, human papillomavirus and the link between them was limited. Abnormal screening results affected participants' sense of well-being and were associated with anxiety and concern about developing anal cancer. HIV-negative men receiving abnormal results showed higher levels of distress compared to their HIV-positive counterparts. Consultations with general practitioners about abnormal results had an important role in increasing participants' understanding and in moderating their anxiety. CONCLUSION: Anal cancer screening should be accompanied by health education around anal cancer, its aetiology and the meaning of associated test results. Simple and effective communication strategies should be encouraged. Collaboration with general practitioners could assist the process of education and reporting test results.

Beyond the treatment effect: Evaluating the effects of patient preferences in randomised trials.

The treatments under comparison in a randomised trial should ideally have equal value and acceptability - a position of equipoise - to study participants. However, it is unlikely that true equipoise exists in practice, because at least some participants may have preferences for one treatment or the other, for a variety of reasons. These preferences may be related to study outcomes, and hence affect the estimation of the treatment effect. Furthermore, the effects of preferences can sometimes be substantial, and may even be larger than the direct effect of treatment. Preference effects are of interest in their own right, but they cannot be assessed in the standard parallel group design for a randomised trial. In this paper, we describe a model to represent the impact of preferences on trial outcomes, in addition to the usual treatment effect. In particular, we describe how outcomes might differ between participants who would choose one treatment or the other, if they were free to do so. Additionally, we investigate the difference in outcomes depending on whether or not a participant receives his or her preferred treatment, which we characterise through a so-called preference effect. We then discuss several study designs that have been proposed to measure and exploit data on preferences, and which constitute alternatives to the conventional parallel group design. Based on the model framework, we determine which of the various preference effects can or cannot be estimated with each design. We also illustrate these ideas with some examples of preference designs from the literature.

Patients' perspectives of long-term follow-up for localised cutaneous melanoma.

BACKGROUND: Little is known about the value of long-term follow-up for localised cutaneous melanoma from the patients' perspective. This study aimed to explore the benefits and potential downsides of follow-up; feelings about changes to frequency of follow-up, and patient-centred recommendations for improving follow-up care. METHODS: Qualitative analysis of 29 in-depth interviews conducted with Australian patients undergoing long-term follow-up after surgical treatment of stage I/II melanoma. RESULTS: Patient-perceived benefits of follow-up included reassurance, early detection of new melanomas and non-melanoma skin cancers, education about skin self-examination, the opportunity to ask questions, and reinforcement of 'sunsafe' behaviours. Downsides included anxiety leading up to and during follow-up visits; inconvenience of travel to attend visits; and lost work time. Patients varied in their engagement with skin self-examination, and their views on multiple skin excisions, but highly valued access to specialists for unscheduled visits. Most patients felt their follow-up intervals could be extended to 12 months if recommended by their clinician. CONCLUSION: The benefits and potential downsides of follow-up should be discussed with patients when deciding on a melanoma follow-up plan to achieve a balance between inducing additional patient anxiety and providing reassurance. Follow-up intervals of 12 months appear to be acceptable to patients.

Physician-patient-companion communication and decision-making: a systematic review of triadic medical consultations.

OBJECTIVE: To systematically review quantitative and qualitative studies exploring physician-adult patient-adult companion (triadic) communication and/or decision-making within all medical encounters. METHODS: Studies were identified via database searches and reference lists. One author assessed eligibility of studies, verified by two co-authors. Data were extracted by one author and cross-checked for accuracy. Two authors assessed the quality of included articles using standardized criteria. RESULTS: Of the 8409 titles identified, 52 studies were included. Summary statements and tables were developed for each of five identified themes. Results indicated companions regularly attended consultations, were frequently perceived as helpful, and assumed a variety of roles. However, their involvement often raised challenges. Patients with increased need were more often accompanied. Some companion behaviours were felt to be more helpful (e.g. informational support) and less helpful (e.g. dominating/demanding behaviours), and preferences for involvement varied widely. CONCLUSION: Triadic communication in medical encounters can be helpful but challenging. Based on analysis of included studies, preliminary strategies for health professionals are proposed. PRACTICE IMPLICATIONS: Preliminary strategies for health professionals include (i) encourage/involve companions, (ii) highlight helpful companion behaviours, (iii) clarify and agree upon role preferences of patient/companions. Future studies should develop and evaluate specific strategies for optimizing triadic consultations.

Optimal allocation of participants for the estimation of selection, preference and treatment effects in the two-stage randomised trial design.

Outcomes in clinical trials may be affected by the choice of treatment that participants might make, if they were indeed allowed to choose (a so-called selection effect), and by whether they actually receive their preferred treatment (a preference effect). Selection and preference effects can be important, but they cannot be estimated in the conventional trial design. An alternative approach is the two-stage randomised trial, in which participants are first randomly divided into two subgroups. In one subgroup, participants are randomly assigned to treatments, while in the other, participants are allowed to choose their own treatment. This approach yields estimates of the direct treatment effect, and of the preference and selection effects. The latter two provide insight that goes considerably beyond what is possible in the standard randomised trial. In this paper, we determine the optimal proportion of participants who should be allocated to the choice subgroup. The precision of the estimated selection, preference and treatment effects are functions of: the total sample size; the proportion of participants allocated to choose their treatment; the variances of the outcome; the proportions of participants who select each treatment in the choice group; and the selection, preference and treatment effects themselves. We develop general expressions for the optimum proportion of participants in the choice group, depending on which effects are of primary interest. We illustrate the results with trial data comparing alternative clinical management strategies for women with abnormal results on cervical screening.

Social and psychological impact of HPV testing in cervical screening: a qualitative study.

OBJECTIVE: Human papillomavirus (HPV) testing has been proposed for inclusion in the UK cervical screening programme. While testing may bring some benefits to the screening programme, testing positive for HPV, a sexually transmitted virus, may have adverse social and psychological consequences for women. The aim of this study was to examine the social and psychological impact of HPV testing in the context of cervical cancer screening. METHOD: In-depth interviews generating qualitative data were carried out with 74 women participating in HPV testing in England between June 2001 and December 2003. Purposive sampling was used to ensure heterogeneity in age, ethnic group, marital status, socioeconomic background, cytology, and HPV results among participants. RESULTS: Testing positive for HPV was associated with adverse social and psychological consequences, relating primarily to the sexually transmitted nature of the virus and its link to cervical cancer. Women described feeling stigmatised, anxious and stressed, concerned about their sexual relationships, and were worried about disclosing their result to others. Anxiety about the infection was widespread, but the impact of testing positive varied. The psychological burden of the infection related to women's relationship status and history, their social and cultural norms and practices around sex and relationships, and their understanding of key features of HPV. CONCLUSION: HPV testing should be accompanied by extensive health education to inform women and to de-stigmatise infection with the virus to ensure that any adverse impact of the infection on women's wellbeing is minimised.

Acceptability of unsupervised HPV self-sampling using written instructions.

OBJECTIVES: The study measured the acceptability of self-sampling for human papillomavirus (HPV) testing in the context of cervical cancer screening. Women carried out self-sampling unsupervised, using a written instruction sheet. SETTING: Participants were women attending either a family planning clinic or a primary care trust for routine cervical screening. METHODS: Women (n = 902) carried out self-sampling for HPV testing and then a clinician did a routine cervical smear and HPV test. Immediately after having the two tests, participants completed a measure of acceptability for both tests, and answered questions about ease of using the instruction sheet and willingness to use self-sampling in the future. RESULTS: The majority of women found self-sampling more acceptable than the clinician-administered test, but there was a lack of confidence that the test had been done correctly. Significant demographic differences in attitudes were found, with married women having more favourable attitudes towards self-sampling than single women, and Asian women having more negative attitudes than women in other ethnic groups. Intention to use self-sampling in the future was very high across all demographic groups. CONCLUSION: Self-sampling for HPV testing was highly acceptable in this large and demographically diverse sample, and women were able to carry out the test alone, using simple written instructions. Consistent with previous studies, women were concerned about doing the test properly and this issue will need to be addressed if self-sampling is introduced. More work is needed to see whether the demographic differences we found are robust and to identify reasons for lower acceptability among single women and those from Asian background.

Making sense of information about HPV in cervical screening: a qualitative study.

Introducing human papillomavirus (HPV) testing into cervical cancer screening has the potential to change the way that women understand cervical cancer, the psychological impact of abnormal screening results and the likelihood of future participation in screening. The study used in-depth interviews to examine how women make sense of information about HPV in the context of cervical cancer screening. A total of 74 women were recruited following participation in HPV testing. Women varied widely in their beliefs about the aetiology of cervical cancer and its relationship with sexual activity, as well as in their understanding of the sexually transmitted nature of HPV. While some women who understood that HPV is sexually transmitted were able to integrate this into their existing model of cervical cancer, others were shocked by the link between cervical cancer and sex, of which they had been previously unaware. Women were generally reassured to know that HPV is common, has no symptoms, can lie dormant for many years, can clear up on its own and need not raise concerns about transmission to sexual partners. Women's understanding of HPV varied considerably, even after participation in testing. The way in which information is presented to women will be crucial in minimising the negative psychological impact of testing positive and ensuring that participation in screening remains high.

Attitudes to self-sampling for HPV among Indian, Pakistani, African-Caribbean and white British women in Manchester, UK.

OBJECTIVE: To examine attitudes to self-sampling for human papillomavirus (HPV) testing among women from contrasting ethnic groups. SETTING: Manchester, UK. METHODS: Two hundred women of Indian, Pakistani, African-Caribbean and white British origin were recruited from social and community groups to participate in a questionnaire survey. The questionnaire included items on attitudes to self-sampling and intention to use the test. RESULTS: Willingness to try to use the test was high, and women did not foresee religious or cultural barriers to self-sampling; however, a large proportion of women were concerned about doing the test properly. This concern was greatest in the Indian and African-Caribbean groups. CONCLUSIONS: Although women's willingness to try self-sampling for HPV is encouraging, worries about carrying out the procedure correctly must be addressed if women are to feel confident about the results of self-sampling methods and reassured by a negative result.

Awareness of human papillomavirus among women attending a well woman clinic.

OBJECTIVES: To assess the level and accuracy of public understanding of human papillomavirus (HPV) in the United Kingdom. METHODS: Women attending a well woman clinic were asked to complete a questionnaire assessing HPV awareness and specific knowledge about the virus. RESULTS: Questionnaires were completed by 1032 women, of whom 30% had heard of HPV. Older women, non-smokers, and those with a history of candida, genital warts, or an abnormal smear result were more likely to have heard of HPV. Even among those who had heard of HPV, knowledge was generally poor, and fewer than half were aware of the link with cervical cancer. There was also confusion about whether condoms or oral contraceptives could protect against HPV infection. CONCLUSIONS: In this relatively well educated sample, awareness and knowledge of HPV were poor. Public education is urgently needed so that women participating in cervical cancer screening are fully informed about the meaning of their results, especially if HPV testing is soon to be introduced.

Attitudes towards HPV testing: a qualitative study of beliefs among Indian, Pakistani, African-Caribbean and white British women in the UK.

This study examined attitudes to human papillomavirus (HPV) testing among a purposively selected sample of women from four ethnic groups: white British, African Caribbean, Pakistani and Indian. The design was qualitative, using focus group discussion to elicit women's attitudes towards HPV testing in the context of cervical cancer prevention. The findings indicate that although some women welcomed the possible introduction of HPV testing, they were not fully aware of the sexually transmitted nature of cervical cancer and expressed anxiety, confusion and stigma about HPV as a sexually transmitted infection. The term 'wart virus', often used by medical professionals to describe high-risk HPV to women, appeared to exacerbate stigma and confusion. Testing positive for HPV raised concerns about women's sexual relationships in terms of trust, fidelity, blame and protection, particularly for women in long-term monogamous relationships. Participation in HPV testing also had the potential to communicate messages of distrust, infidelity and promiscuity to women's partners, family and community. Concern about the current lack of available information about HPV was clearly expressed and public education about HPV was seen as necessary for the whole community, not only women. The management of HPV within cervical screening raises important questions about informed participation. Our findings suggest that HPV testing has the potential to cause psychosocial harm to women and their partners and families.

Socioeconomic variation in participation in colorectal cancer screening.

OBJECTIVES: To investigate socioeconomic variation in participation in flexible sigmoidoscopy (FS) screening for colorectal cancer. DESIGN: A prospective study nested within a multicentre randomised controlled trial of the efficacy of FS screening for the prevention and early detection of colorectal cancer (the UK flexible sigmoidoscopy trial). SETTING: Glasgow, Scotland. PARTICIPANTS: 55-64 year old adults, registered with general practitioners participating in the FS trial. MAIN OUTCOME MEASURES: Screening participation measured at three levels: questionnaire return; interest in screening; attendance at screening. RESULTS: Socioeconomic deprivation was a strong predictor of participation. Return of the screening questionnaire, expression of interest in screening, and attendance at the test, were all lower in more deprived groups. CONCLUSIONS: These results highlight the need to consider ways to reduce inequalities in screening uptake, in parallel with the introduction of any new screening programmes, to avoid exacerbating social gradients in cancer mortality.

Declining the offer of flexible sigmoidoscopy screening for bowel cancer: a qualitative investigation of the decision-making process.

Qualitative methods were used to investigate decision-making among a group of older adults who declined the offer of flexible sigmoidoscopy screening for bowel cancer. Interviews were conducted with 60 people (30 men and 30 women) who either had not responded to the screening letter or who responded saying that they were not interested in participating. The findings suggest that low perceived susceptibility to bowel cancer, in terms of current health status, family history or absence of bowel symptoms. was an important factor in the decision to decline screening. Procedural barriers such as embarrassment, pain/discomfort and perceived unpleasantness of the test were reported as relatively minor, although the test was considered more physically intrusive than other screening tests. Avoidant attitudes emerged as an important theme and were reported by a third of respondents. Distinct patterns of decision-making were also observed and three groups emerged from accounts: (i) forgetting or avoiding making a decision about the test (ii) a confident rejection of the test based on a few salient factors, and (iii) a more careful consideration of the test focusing on issues of susceptibility. The findings are discussed in the context of models of health behaviour and bowel cancer screening participation research.

Psychosocial influences on older adults' interest in participating in bowel cancer screening.

BACKGROUND: As part of a multicenter, randomized controlled trial of the efficacy of flexible sigmoidoscopy for the prevention of bowel cancer, an investigation of the predictors of screening interest was carried out in a subsample of older adults. METHOD: The aim of the study was to establish the predictive power of the Health Belief Model (HBM) and to evaluate the contribution of HBM elements in mediating the effect of other demographic and health variables which have been found to be associated with screening interest and participation. A total of 5,099 participants were sent a postal questionnaire which examined screening interest, attitudes toward screen ing (benefits and barriers), perceived bowel cancer risk, bowel cancer worry, bowel symptoms, health status, state anxiety, and optimism. A total of 3,648 questionnaires were returned completed, giving a response rate of 71.5%. RESULTS: The results showed that threat, barriers, and benefits explained 47% of the variance in interest. Demographic and health variables were also associated with screening interest, although most of their effect was mediated by the HBM constructs. DISCUSSION: This community study in older adults showed a high level of interest in participating in screening. The large sample size provided the opportunity to test the value of the HBM model and to examine mediation of demographic and health variables. The HBM proved to be a good model of screening interest. These results further our understanding of the decision processes in participating in cancer screening and point to directions to increase the level of participation in community samples.