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Hypothetical scenarios and an example of prompts used in focus group discussions.

Hypothetical scenarios and an example of prompts used in focus group discussions.

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Effective chemoprevention strategies exist for women at high risk for breast cancer, yet uptake is low. Physician recommendation is an important determinant of uptake, but little is known about clinicians' attitudes to chemoprevention. Focus groups were conducted with clinicians at five Family Cancer Centers in three Australian states. Discussions...

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Evaluating the risk of breast cancer makes it possible to identify women with a high risk of developing breast cancer in the future. Adopting a healthier lifestyle, involving diet and exercise, is one way of reducing this risk-but there are other, non-modifiable risk factors, such as family history, genetics and diagnosis of premalignant lesions. I...

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... Some of the reasons quoted include lack of perceived benefit and being poorly informed of the chemoprevention. Furthermore, a focus group of family cancer clinicians in Australia recognized similar barriers (Keogh et al. 2009). Smith et al. (2016b) also identified the lack of clarity in the NICE guideline as to who should be initiating the prescription and offer subsequent patient care. ...
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In England, the National Institute for Health and Care Excellence guideline for familial breast cancer recommends chemoprevention for women at high and moderate familial risk of breast cancer. However, prescribing of chemoprevention has not improved since the introduction of the guideline in 2013. The study aims to identify the current practice, in England, of familial cancer specialists offering chemoprevention and recommending prescribing in primary care. This was an anonymized national cross-sectional survey of familial breast cancer risk services in England. Lead clinicians were sent an online survey link. The survey questions included whether chemoprevention was offered/considered for high- and moderate-risk women, when chemoprevention prescribing and recommendation to primary care started, medications prescribed, age groups considered for chemoprevention, and existence of a shared prescribing protocol with primary care. The survey was sent to 115 hospital services; responses from 50 services (43%) were included in the analysis. Of the 40 services offering chemoprevention for high-risk women, 15 (38%) did not prescribe but 31 (78%) recommended prescribing to primary care. Of the 31 services considering chemoprevention for moderate risk, eight (26%) did not prescribe with 26 (84%) recommended prescribing to primary care. Only three services reported having a shared protocol with primary care. Within 3 years of the guidelines, many services recognized the role of chemoprevention for both high and moderate risk with a key role for primary care to initiate prescribing. However, there is still room for improvement.
... Reasons for low use of risk-reducing medication are multifactorial, including patient-and physician-related factors. Concern about side effects is a well-described barrier to use (17)(18)(19)(20)(21)(22)(23). Physician recommendation, family history of breast cancer, abnormal breast biopsy, higher perceived breast cancer risk, and higher cancer-specific anxiety are associated with risk-reducing medication use (21,24). ...
Article
Guidelines endorse the use of chemoprevention for breast cancer risk reduction. This study examined the barriers and facilitators to chemoprevention use for Australian women at increased risk of breast cancer, and their clinicians. Surveys, based on the Theoretical Domains Framework, were mailed to 1,113 women at ≥16% lifetime risk of breast cancer who were enrolled in the Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer cohort study (kConFab), and their 524 treating clinicians. Seven hundred twenty-five women (65%) and 221 (42%) clinicians responded. Only 10 (1.4%) kConFab women had ever taken chemoprevention. Three hundred seventy-eight (52%) kConFab women, two (3%) breast surgeons, and 51 (35%) family physicians were not aware of chemoprevention. For women, the strongest barriers to chemoprevention were side effects (31%) and inadequate information (23%), which operate in the Theoretical Domains Framework domains of “beliefs about consequences” and “knowledge,” respectively. Strongest facilitators related to tamoxifen's long-term efficacy (35%, “knowledge,” “beliefs about consequences,” and “goals” domains), staying healthy for family (13%, “social role” and “goals” domains), and abnormal breast biopsy (13%, “environmental context” domain). The strongest barrier for family physicians was insufficient knowledge (45%, “knowledge” domain) and for breast surgeons was medication side effects (40%, “beliefs about consequences” domain). The strongest facilitators for both clinician groups related to clear guidelines, strong family history, and better tools to select patients (“environmental context and resources” domain). Clinician knowledge and resources, and beliefs about the side-effect consequences of chemoprevention, are key domains that could be targeted to potentially enhance uptake. Prevention Relevance Despite its efficacy in reducing breast cancer incidence, chemoprevention is underutilised. This survey study of Australian women and their clinicians used behavioural change theory to identify modifiable barriers to chemoprevention uptake, and to suggest interventions such as policy change, educational resources and public campaigns, that may increase awareness and use. See related Spotlight by Vogel, p. 1
... This creates an important barrier to physician prescribing and may contribute to low uptake rates of SERMs. 40 The preferable side effect profile may mean a greater uptake of raloxifene in postmenopausal women at increased risk of breast cancer, especially if it were to be made available on the PBS for risk reduction. ...
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Background In Australia, evidence-based guidelines recommend that women consider taking selective oestrogen receptor modulators (SERMs) to reduce their risk of breast cancer. In practice, this requires effective methods for communicating the harms and benefits of taking SERMs so women can make an informed choice. Aim To evaluate how different risk presentations influence women’s decisions to consider taking SERMs. Design and setting Cross-sectional, correlational study of Australian women in general practice. Method Three risk communication formats were developed that included graphics, numbers, and text to explain the reduction in breast cancer risk and risk of side effects for women taking SERMs (raloxifene or tamoxifen). Women aged 40–74 years in two general practices were shown the risk formats using vignettes of hypothetical women at moderate or high risk of breast cancer and asked to choose ‘If this was you, would you consider taking a SERM?’ Descriptive statistics and predictors (risk format, level of risk, and type of SERM) of choosing SERMs were determined by logistic regression. Results A total of 288 women were recruited (an 88% response rate) between March and May 2017. The risk formats that showed a government statement and an icon array were associated with a greater likelihood of considering SERMs relative to one that showed a novel expected frequency tree. Risk formats for raloxifene and for the high-risk vignettes were also more strongly associated with choosing to consider SERMs. No associations were found with any patient demographics. Conclusion Specific risk formats may lead to more women considering taking SERMs to reduce breast cancer risk, especially if they are at high risk of the condition. Raloxifene may be a more acceptable SERM to patients.
... The two leading risk-reduction strategies for women at increased BC risk are risk-reducing mastectomy, which could reduce risk by over 90% [3], and use of medications such as the selective estrogen receptor modulators or aromatase inhibitors, which reduce risk of estrogen receptor (ER)-positive BC by about 30-65% [4][5][6]. Despite the proven efficacy of these options, uptake remains lowand high-risk women often inquire about alternative BC prevention strategies [7][8][9][10][11][12]. Regular use of aspirin and other non-steroidal anti-inflammatory drugs (NSAIDs) including COX-2 inhibitors could be one such alternative. ...
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Background: The use of aspirin and other non-steroidal anti-inflammatory drugs (NSAIDs) has been associated with reduced breast cancer risk, but it is not known if this association extends to women at familial or genetic risk. We examined the association between regular NSAID use and breast cancer risk using a large cohort of women selected for breast cancer family history, including 1054 BRCA1 or BRCA2 mutation carriers. Methods: We analyzed a prospective cohort (N = 5606) and a larger combined, retrospective and prospective, cohort (N = 8233) of women who were aged 18 to 79 years, enrolled before June 30, 2011, with follow-up questionnaire data on medication history. The prospective cohort was further restricted to women without breast cancer when medication history was asked by questionnaire. Women were recruited from seven study centers in the United States, Canada, and Australia. Associations were estimated using multivariable Cox proportional hazards regression models adjusted for demographics, lifestyle factors, family history, and other medication use. Women were classified as regular or non-regular users of aspirin, COX-2 inhibitors, ibuprofen and other NSAIDs, and acetaminophen (control) based on self-report at follow-up of ever using the medication for at least twice a week for ≥1 month prior to breast cancer diagnosis. The main outcome was incident invasive breast cancer, based on self- or relative-report (81% confirmed pathologically). Results: From fully adjusted analyses, regular aspirin use was associated with a 39% and 37% reduced risk of breast cancer in the prospective (HR = 0.61; 95% CI = 0.33-1.14) and combined cohorts (HR = 0.63; 95% CI = 0.57-0.71), respectively. Regular use of COX-2 inhibitors was associated with a 61% and 71% reduced risk of breast cancer (prospective HR = 0.39; 95% CI = 0.15-0.97; combined HR = 0.29; 95% CI = 0.23-0.38). Other NSAIDs and acetaminophen were not associated with breast cancer risk in either cohort. Associations were not modified by familial risk, and consistent patterns were found by BRCA1 and BRCA2 carrier status, estrogen receptor status, and attained age. Conclusion: Regular use of aspirin and COX-2 inhibitors might reduce breast cancer risk for women at familial or genetic risk.
... There have been few attempts to understand clinician attitudes. A focus group study in Australia in 2009 reported a degree of confusion over the eligibility of specific patient groups, with some clinicians expressing greater confidence in discussing preventive therapy with carriers of deleterious BRCA1 and BRCA2 mutations, despite poor evidence in this group [11] . Clinicians recognised their limitations in knowledge, and this affected their willingness to discuss it with patients. ...
... Some FHCG clinicians felt poorly informed about the evidence for preventive therapy, particularly with reference to specific clinical groups. Similar findings were observed among Australian clinicians who reported a preference for discussing preventive therapy with carriers of BRCA1 and BRCA2 deleterious mutations, despite a lack of evidence in these groups [11] . Encouraging dissemination of clinical trial findings through study days and local network meetings could improve clinician knowledge and enhance the quality of communication with patients. ...
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Aims: The use of tamoxifen and raloxifene as preventive therapy for women at increased risk of breast cancer was approved by the National Institute for Health and Care Excellence (NICE) in 2013. We undertook a qualitative investigation to investigate the factors affecting the implementation of preventive therapy within the UK. Methods: We recruited general practitioners (GPs) (n = 10) and clinicians working in family history or clinical genetics settings (FHCG clinicians) (n = 15) to participate in semi-structured interviews. Data were coded thematically within the Consolidated Framework for Implementation Research. Results: FHCG clinicians focussed on the perceived lack of benefit of preventive therapy and difficulties interpreting the NICE guidelines. FHCG clinicians felt poorly informed about preventive therapy, and this discouraged patient discussions on the topic. GPs were unfamiliar with the concept of preventive therapy, and were not aware that they may be asked to prescribe it for high-risk women. GPs were reluctant to initiate therapy because it is not licensed, but were willing to continue a prescription if it had been started in secondary or tertiary care. Conclusions: Barriers to implementing preventive therapy within routine clinical practice are common and could be addressed by engaging all stakeholders during the development of policy documents.
... Awareness and understanding of the benefits and risks associated with SERMs is crucial in ensuring uptake in appropriate women. We have shown that a major barrier to the prescribing of SERMs for breast cancer prevention is the perception that side effects outweigh benefits [26]. In fact, data from randomized prevention trials show that the absolute risk of serious side-effects is low, particularly for pre-menopausal women [27] and that global health status is similar in women on tamoxifen or placebo [28,29]. ...
... Clinician's attitudes towards the topic of preventive therapy are not well known, but prescribing concerns may affect their willingness to discuss this option. [82] For example, tamoxifen and raloxifene are not licensed for prevention in some countries, which can dissuade prescribing. [82][83][84] Discussing medication and writing prescriptions are also unfamiliar tasks for many clinicians working with high risk populations. ...
... [82] For example, tamoxifen and raloxifene are not licensed for prevention in some countries, which can dissuade prescribing. [82][83][84] Discussing medication and writing prescriptions are also unfamiliar tasks for many clinicians working with high risk populations. Providing appropriate support and training may encourage the implementation of preventive therapy into routine patient care. ...
Article
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Background: Preventive therapy is a risk reduction option for women who have an increased risk of breast cancer. The effectiveness of preventive therapy to reduce breast cancer incidence depends on adequate levels of uptake and adherence to therapy. We aimed to systematically review articles reporting uptake and adherence to therapeutic agents to prevent breast cancer among women at increased risk, and identify the psychological, clinical and demographic factors affecting these outcomes. Design: Searches were performed in PubMed, CINAHL, EMBASE, and PsychInfo, yielding 3851 unique articles. Title, abstract and full text screening left 53 articles, and a further 4 studies were identified from reference lists, giving a total of 57. This review was prospectively registered with PROSPERO (CRD42014014957). Results: Twenty four articles reporting 26 studies of uptake in 21,423 women were included in a meta-analysis. The pooled uptake estimate was 16.3% (95% CI, 13.6-19.0), with high heterogeneity (I^2=98.9%, p<0.001). Uptake was unaffected by study location or agent, but was significantly higher in trials (25.2% [95% CI, 18.3-32.2]) than in non-trial settings (8.7% [95% CI, 6.8-10.9]) (p<0.001). Factors associated with higher uptake included having an abnormal biopsy, a physician recommendation, higher objective risk, fewer side-effect or trial concerns, and older age. Adherence (day-to-day use or persistence) over the first year was adequate. However, only one study reported a persistence of ≥80% by 5-years. Factors associated with lower adherence included allocation to tamoxifen (vs. placebo or raloxifene), depression, smoking, and older age. Risk of breast cancer was discussed in all qualitative studies. Conclusions: Uptake of therapeutic agents for the prevention of breast cancer is low, and long-term persistence is often insufficient for women to experience the full preventive effect. Uptake is higher in trials, suggesting further work should focus on implementing preventive therapy within routine care.
... Awareness and understanding of the benefits and risks associated with SERMs is crucial in ensuring uptake in appropriate women. We have shown that a major barrier to the prescribing of SERMs for breast cancer prevention is the perception that side effects outweigh benefits [26]. In fact, data from randomized prevention trials show that the absolute risk of serious side-effects is low, particularly for pre-menopausal women [27] and that global health status is similar in women on tamoxifen or placebo [28,29]. ...
Article
Full-text available
Decision support tools for the assessment and management of breast cancer risk may improve uptake of prevention strategies. End-user input in the design of such tools is critical to increase clinical use. Before developing such a computerized tool, we examined clinicians' practice and future needs. Twelve breast surgeons, 12 primary care physicians and 5 practice nurses participated in 4 focus groups. These were recorded, coded, and analyzed to identify key themes. Participants identified difficulties assessing risk, including a lack of available tools to standardize practice. Most expressed confidence identifying women at potentially high risk, but not moderate risk. Participants felt a tool could especially reassure young women at average risk. Desirable features included: evidence-based, accessible (e.g. web-based), and displaying absolute (not relative) risks in multiple formats. The potential to create anxiety was a concern. Development of future tools should address these issues to optimize translation of knowledge into clinical practice.
... There is strong evidence that SERMs, such as tamoxifen and raloxifene, taken daily for five years reduce breast cancer risk by 38% (5). However, current uptake of these agents is very low, even in women at high familial-risk (7)(8)(9)(10)(11). Whilst it has been estimated that 15% of women in the United States between the ages of 35 and 79 could potentially benefit from tamoxifen (12), less than 0.2% of women in this age range are taking tamoxifen for the prevention of breast cancer (13). ...
Article
Objective Selective Estrogen Receptor Modulators (SERMs) reduce breast cancer risk by 38%. However, uptake is low and the reasons are not well understood. This study applied Protection Motivation Theory (PMT) to determine factors associated with intention to take SERMs. Methods Women at increased risk of breast cancer (N = 107), recruited from two familial cancer clinics in Australia, completed a questionnaire containing measures of PMT constructs. Hierarchical multiple linear regression analysis was used to analyze the data. Results Forty-five percent of women said they would be likely or very likely to take SERMs in the future. PMT components accounted for 40% of variance in intention to take SERMs. Perceived vulnerability, severity and response efficacy appeared the most influential in women's decisions to take or not take SERMs. Conclusion Many women are interested in SERMs as a risk management option. Accurate risk estimation and an understanding of the benefits of SERMs are critical to women's decision making. Practice Implications: Health professionals need to explore women's perceptions of their risk and its consequences, as well as providing clear evidence-based information about the efficacy of SERMs. Exploring the source and strength of beliefs about SERMs may allow more effective, tailored counseling.
... There is strong evidence that SERMs such as tamoxifen and raloxifene, taken daily for 5 years, reduce breast cancer risk by 38% (Cuzick et al. 2013). However, uptake of these agents is very low, even in women at high familialrisk (Phillips et al. 2006;Savage 2007;Vogel 2010;Keogh et al. 2009;Evans et al. 2001;Collins et al. 2013). Whilst it has been estimated that 15% of women in the United States aged 35 to 79 could potentially benefit from tamoxifen (Freedman et al. 2003), less than 0.2% of women in this age range are taking tamoxifen (Waters et al. 2010). ...
... Perhaps women could be offered a trial of SERMs to determine if they are substantially affected by vasomotor and gynecologic side effects, before making a decision whether to plan for 5 years of use. Communicating absolute, rather than relative risks for serious potential side effects such as endometrial cancer and thrombosis may also help to put these into perspective, especially for pre-menopausal women where they are rare (Keogh et al. 2009;Harvey et al. 2011;Fisher et al. 1998). ...
... Women who attend Australian familial cancer clinics have aboveaverage educational and socioeconomic levels and may not be representative of the broader population of women at increased risk (Meiser et al. 2000;Coyne & Anderson 1999;Coyne et al. 2000;Cull et al. 1998). Nonetheless, findings are highly relevant to countries such as Australia, where the vast majority of assessment and genetic-testing of women at increased familial risk is done by a network of Family Cancer Centers, and these women are the most likely to be offered SERMs (Keogh et al. 2009). ...
Article
Full-text available
Selective Estrogen Receptor Modulators (SERMs) reduce the risk of breast cancer for women at increased risk by 38%. However, uptake is extremely low and the reasons for this are not completely understood. The aims of this study were to utilize time trade-off methods to determine the degree of risk reduction required to make taking SERMs worthwhile to women, and the factors associated with requiring greater risk reduction to take SERMs. Women at increased risk of breast cancer (N = 107) were recruited from two familial cancer clinics in Australia. Participants completed a questionnaire either online or in pen and paper format. Hierarchical multiple linear regression analysis was used to analyze the data. Overall, there was considerable heterogeneity in the degree of risk reduction required to make taking SERMs worthwhile. Women with higher perceived breast cancer risk and those with stronger intentions to undergo (or who had undergone) an oophorectomy required a smaller degree of risk reduction to consider taking SERMs worthwhile. Women at increased familial risk appear motivated to consider SERMs for prevention. A tailored approach to communicating about medical prevention is essential. Health professionals could usefully highlight the absolute (rather than relative) probability of side effects and take into account an individual's perceived (rather than objective) risk of breast cancer.