Women's interest, knowledge, and attitudes relating to anti-Mullerian hormone testing: a randomized controlled trial.

STUDY QUESTION: What is the impact of co-designed, evidence-based information regarding the anti-Mullerian hormone (AMH) test on women's interest in having the test? SUMMARY ANSWER: Women who viewed the evidence-based information about the AMH test had lower interest in having an AMH test than women who viewed information produced by an online company selling the test direct-to-consumers. WHAT IS KNOWN ALREADY: Online information about AMH testing often has unfounded claims about its ability to predict fertility and conception, and evidence suggests that women seek out and are recommended the AMH test as a measure of their fertility potential. STUDY DESIGN, SIZE, DURATION: An online randomized trial was conducted from November to December 2022. Women were randomized (double-blind, equal allocation) to view one of two types of information: co-designed, evidence-based information about the AMH test (intervention), or existing information about the AMH test from a website which markets the test direct-to-consumers (control). A total of 967 women were included in the final analysis. PARTICIPANTS/MATERIALS, SETTING, METHODS: Participants were women recruited through an online panel, who were aged 25-40 years, living in Australia or The Netherlands, had never given birth, were not currently pregnant but would like to have a child now or in the future, and had never had an AMH test. The primary outcome was interest in having an AMH test (seven-point scale; 1 = definitely NOT interested to 7 = definitely interested). Secondary outcomes included attitudes, knowledge, and psychosocial and behavioural outcomes relating to AMH testing. MAIN RESULTS AND THE ROLE OF CHANCE: Women who viewed the evidence-based information about the AMH test had lower interest in having an AMH test (MD = 1.05, 95% CI = 0.83-1.30), less positive attitudes towards (MD = 1.29, 95% CI = 4.57-5.70), and higher knowledge about the test than women who viewed the control information (MD = 0.75, 95% CI = 0.71-0.82). LIMITATIONS, REASONS FOR CAUTION: The sample was more highly educated than the broader Australian and Dutch populations and some measures (e.g. influence on family planning) were hypothetical in nature. WIDER IMPLICATIONS OF THE FINDINGS: Women have higher knowledge of and lower interest in having the AMH test when given evidence-based information about the test and its limitations. Despite previous studies suggesting women are enthusiastic about AMH testing to learn about their fertility potential, we demonstrate that this enthusiasm does not hold when they are informed about the test's limitations. STUDY FUNDING/COMPETING INTEREST(S): This project was supported by an NHMRC Emerging Leader Research Fellowship (2009419) and the Australian Health Research Alliance's Women's Health Research, Translation and Impact Network EMCR award. B.W.M. reports consultancy for ObsEva and Merck and travel support from Merck. D.L. is the Medical Director of, and holds stock in, City Fertility NSW and reports consultancy for Organon and honoraria from Ferring, Besins, and Merck. K.H. reports consultancy and travel support from Merck and Organon. K.M. is a director of Health Literacy Solutions that owns a licence of the Sydney Health Literacy Lab Health Literacy Editor. No other relevant disclosures exist. TRIAL REGISTRATION NUMBER: ACTRN12622001136796. TRIAL REGISTRATION DATE: 17 August 2022. DATE OF FIRST PATIENT'S ENROLMENT: 21 November 2022.

How common is add-on use and how do patients decide whether to use them? A national survey of IVF patients.

STUDY QUESTION: What is the prevalence and pattern of IVF add-on use in Australia? SUMMARY ANSWER: Among women having IVF in the last 3 years, 82% had used one or more IVF add-on, most commonly acupuncture, preimplantation genetic testing for aneuploidy and Chinese herbal medicine. WHAT IS KNOWN ALREADY: IVF add-ons are procedures, techniques or medicines which may be considered nonessential to IVF, but usually used in attempts to improve the probability of conception and live birth. The use of IVF add-ons is believed to be widespread; however, there is little information about the prevalence and patterns of use in different settings. STUDY DESIGN, SIZE, DURATION: An online survey was distributed via social media to women in Australia who had undergone IVF since 2017. Women were excluded if they were gestational surrogates, used a surrogate, or underwent ovarian stimulation for oocyte donation or elective oocyte cryopreservation only. The survey was open from 21 June to 14 July 2020. PARTICIPANTS/MATERIALS, SETTING, METHODS: Survey questions included demographics, IVF and medical history, and use of IVF add-ons including details of the type of add-on, costs and information sources used. Participants were also asked about the relative importance of evidence regarding safety and effectiveness, factors considered in decision-making and decision regret. MAIN RESULTS AND THE ROLE OF CHANCE: A total of 1590 eligible responses were analysed. Overall, 82% of women had used one or more add-ons and these usually incurred an additional cost (72%). Around half (54%) had learned about add-ons from their fertility specialist, and most reported that the decision to use add-ons was equally shared with the specialist. Women placed a high level of importance on scientific evidence for safety and efficacy, and half (49%) assumed that add-ons were known to be safe. Most women experienced some regret at the decision to use IVF add-ons (66%), and this was more severe among women whose IVF was unsuccessful (83%) and who believed that the specialist had a larger contribution to the decision to use add-ons (75%). LIMITATIONS, REASONS FOR CAUTION: This retrospective survey relied on patient recall. Some aspects were particularly prone to bias such as contributions to decision-making. This approach to capturing IVF add-on use may yield different results to data collected directly from IVF clinics or from fertility specialists. WIDER IMPLICATIONS OF THE FINDINGS: There is a very high prevalence of IVF add-on use in Australia which may be generalisable to other settings with similar models of IVF provision. Although women placed high importance on scientific evidence to support add-ons, most add-ons do not have robust evidence of safety and effectiveness. This suggests that IVF patients are not adequately informed about the risks and benefits of IVF add-ons, or are not aware of the paucity of evidence to support their use. STUDY FUNDING/COMPETING INTEREST(S): This research was supported by a McKenzie Postdoctoral Fellowship Grant (University of Melbourne), a Department of Obstetrics and Gynaecology Innovation Grant (University of Melbourne) and an NHMRC Investigator Grant (APP1195189). A.P. declares that he provides fertility services at Melbourne IVF (part of Virtus Health). J.W. reports grants from Wellcome Trust, during the conduct of the study, and that publishing benefits his career. The remaining authors report no conflict of interest. TRIAL REGISTRATION NUMBER: N/A.

Clinician provision of oncofertility support in cancer patients of a reproductive age: A systematic review.

OBJECTIVE: The emerging discipline of oncofertility advocates for the timely provision of fertility information and referral for fertility preservation to all cancer patients of reproductive age (<45 years). A systematic review was undertaken on the clinician provision of oncofertility support to determine whether cancer patients are having their support needs adequately met by staff. METHODS: An initial search conducted in May 2016 identified 351 potentially relevant studies. The papers were divided into 2 categories: Papers on the clinician provision of oncofertility support were reviewed for this study, and papers on patient oncofertility support needs were reviewed for a separate systematic review. RESULTS: A total of 23 studies were included within the final review of this manuscript. Although many clinicians are broadly informed about the risk to their patients' fertility brought about by cancer treatment, there are many factors which hinder the appropriate discussion, referral, or service utilisation needed to provide adequate oncofertility support to patients of reproductive age. CONCLUSIONS: Oncofertility support is often not delivered to the standard of current guidelines, with many clinicians not providing the recommended care to all eligible patients, and as such many patients may lack the oncofertility support that they require. The implementation of a clear procedural process would assist clinicians in the provision of oncofertility support for cancer patients of reproductive age.

A systematic review of patient oncofertility support needs in reproductive cancer patients aged 14 to 45 years of age.

OBJECTIVE: Decline in fertility potential brought about by a cancer diagnosis or cancer treatment is one of the biggest impacts to cancer patients' long-term quality of life. As such, the current manuscript aimed to systematically review the literature on oncofertility support needs for cancer patients of a reproductive age (14-45 years of age). METHODS: A systematic review of the literature was conducted in May 2016 through the searching of electronic databases Medline, EMBASE, PSYCH Info, Web of Science and SCOPUS, alongside the screening of relevant reference lists. An initial search identified 351 potentially relevant studies. The papers were divided into 2 categories; papers on patient oncofertility support needs were reviewed for this systematic review, and papers on clinician provision of oncofertility support were reviewed for a separate systematic review. RESULTS: A total of 30 studies were included within the final review. Support needs were categorised as information, service, clinician-patient interactions, psychological, and family. A number of studies indicated that cancer patients place great important on their oncofertility care and have unmet support needs. Patients were satisfied and felt supported when additional care was taken to ensure fertility information and service needs were met. CONCLUSIONS: Patients desire for clinicians to support their concerns through the provision of adequate information, access to oncofertility services, taking time to discuss oncofertility treatment and concerns, specialised psychological support, and responsiveness to individual needs.

Exploring knowledge, attitudes and experience of genitourinary symptoms in women with early breast cancer on adjuvant endocrine therapy.

Clinical trials of adjuvant endocrine therapy in women with early breast cancer have consistently reported that genitourinary symptoms are common. However, little is known about women's experiences of genitourinary symptoms, their views about the symptoms and how they impact on their lives. The aim of this study was to explore knowledge, attitudes and experiences of genitourinary symptoms among women receiving adjuvant endocrine therapy for early breast cancer. Thirty-two semi-structured interviews were conducted and subjected to a rigorous qualitative analysis. Genitourinary symptoms were commonly reported to negatively impact on personal, social and physical activities, were often attributed to anxiety and stress and were a source of embarrassment. Women also commented on the limited information available or provided regarding the potential genitourinary adverse effects of adjuvant endocrine therapy. There was a general lack of awareness that their symptoms could be associated with or exacerbated by adjuvant endocrine therapy. Women indicated a preference to receive information and advice about potential management options from either their general practitioner or specialist. These findings underscore the importance of improving communication and increasing awareness among both clinicians and patients about the potential impact of adjuvant endocrine therapy on genitourinary symptoms.

Motivators and barriers of tamoxifen use as risk-reducing medication amongst women at increased breast cancer risk: a systematic literature review.

BACKGROUND: Selective estrogen receptor modulators, such as tamoxifen, reduce breast cancer risk by up to 50% in women at increased risk for breast cancer. Despite tamoxifen's well-established efficacy, many studies show that most women are not taking up tamoxifen. This systematic literature review aimed to identify the motivators and barriers to tamoxifen use 's amongst high-risk women. METHODS: Using MEDLINE, PsycINFO, and Embase plus reviewing reference lists of relevant articles published between 1995 and 2016, 31 studies (published in 35 articles) were identified, which addressed high-risk women's decisions about risk-reducing medication to prevent breast cancer and were peer-reviewed primary clinical studies. RESULTS: A range of factors were identified as motivators of, and barriers to, tamoxifen uptake including: perceived risk, breast-cancer-related anxiety, health professional recommendation, perceived drug effectiveness, concerns about side-effects, knowledge and access to information about side-effects, beliefs about the role of risk-reducing medication, provision of a biomarker, preference for other forms of breast cancer risk reduction, previous treatment experience, concerns about randomization in clinical trial protocols and finally altruism. CONCLUSIONS: Results indicate that the decision for high-risk women regarding tamoxifen use or non-use as a risk-reducing medication is not straightforward. Support of women making this decision is essential and needs to encompass the full range of factors, both informational and psychological.

Making hard choices easier: a prospective, multicentre study to assess the efficacy of a fertility-related decision aid in young women with early-stage breast cancer.

BACKGROUND: Fertility is a priority for many young women with breast cancer. Women need to be informed about interventions to retain fertility before chemotherapy so as to make good quality decisions. This study aimed to prospectively evaluate the efficacy of a fertility-related decision aid (DA). METHODS: A total of 120 newly diagnosed early-stage breast cancer patients from 19 Australian oncology clinics, aged 18-40 years and desired future fertility, were assessed on decisional conflict, knowledge, decision regret, and satisfaction about fertility-related treatment decisions. These were measured at baseline, 1 and 12 months, and were examined using linear mixed effects models. RESULTS: Compared with usual care, women who received the DA had reduced decisional conflict (ß=-1.51; 95%CI: -2.54 to 0.48; P=0.004) and improved knowledge (ß=0.09; 95%CI: 0.01-0.16; P=0.02), after adjusting for education, desire for children and baseline uncertainty. The DA was associated with reduced decisional regret at 1 year (ß=-3.73; 95%CI: -7.12 to -0.35; P=0.031), after adjusting for education. Women who received the DA were more satisfied with the information received on the impact of cancer treatment on fertility (P<0.001), fertility options (P=0.005), and rated it more helpful (P=0.002), than those who received standard care. CONCLUSION: These findings support widespread use of this DA shortly after diagnosis (before chemotherapy) among younger breast cancer patients who have not completed their families.

Evaluation of implementation of risk management guidelines for carriers of pathogenic variants in mismatch repair genes: a nationwide audit of familial cancer clinics.

INTRODUCTION: This nationwide study assessed the impact of Lynch syndrome-related risk management guidelines on clinicians' recommendations of risk management strategies to carriers of pathogenic variants in mismatch repair genes and the extent to which carriers took up strategies in concordance with guidelines. MATERIALS AND METHODS: Clinic files of 464 carriers (with and without colorectal cancer) were audited for carriers who received their genetic testing results in July 2008-July 2009 (i.e. before guideline release), July 2010-July 2011 and July 2012-July 2013 (both after guideline release) at 12 familial cancer clinics (FCCs) to ascertain the extent to which carriers were informed about risk management in accordance with guidelines. All carriers captured by the audit were invited to participate in interviews; 215 were interviewed to assess adherence to recommended risk management guidelines. RESULTS: The rates of documentation in clinic files increased significantly from pre- to post-guideline for only two out of eight risk management strategies. The strategies with the highest compliance of carriers post-guidelines were: uptake of one or two-yearly colonoscopy (87%), followed by hysterectomy to prevent endometrial cancer (68%), aspirin as risk-reducing medication (67%) and risk-reducing salpingo-oophorectomy (63%). Interrater reliability check for all guidelines showed excellent agreement (k statistics = 0.89). CONCLUSION: These results indicate that there is scope to further increase provision of advice at FCCs to ensure that all carriers receive recommendations about evidence-based risk management. A multi-pronged behaviour change and implementation science approach tailored to specific barriers is likely to be needed to achieve optimal clinician behaviours and outcomes for carriers.

When knowledge of a heritable gene mutation comes out of the blue: treatment-focused genetic testing in women newly diagnosed with breast cancer.

Selection of women for treatment-focused genetic testing (TFGT) following a new diagnosis of breast cancer is changing. Increasingly a patient's age and tumour characteristics rather than only their family history are driving access to TFGT, but little is known about the impact of receiving carrier-positive results in individuals with no family history of cancer. This study assesses the role of knowledge of a family history of cancer on psychosocial adjustment to TFGT in both women with and without mutation carrier-positive results. In-depth semistructured interviews were conducted with 20 women who had undergone TFGT, and who had been purposively sampled to represent women both family history and carrier status, and subjected to a rigorous qualitative analysis. It was found that mutation carriers without a family history reported difficulties in making surgical decisions quickly, while in carriers with a family history, a decision regarding surgery, electing for bilateral mastectomy (BM), had often already been made before receipt of their result. Long-term adjustment to a mutation-positive result was hindered by a sense of isolation not only by those without a family history but also those with a family history who lacked an affected relative with whom they could identify. Women with a family history who had no mutation identified and who had not elected BM reported a lack of closure following TFGT. These findings indicate support deficits hindering adjustment to positive TFGT results for women with and without a family history, particularly in regard to immediate decision-making about risk-reducing surgery.

Breast cancer in young women and its impact on reproductive function.

BACKGROUND: Breast cancer is the most common cancer in women in developed countries, and 12% of breast cancer occurs in women 20-34 years. Survival from breast cancer has significantly improved, and the potential late effects of treatment and the impact on quality of life have become increasingly important. Young women constitute a minority of breast cancer patients, but commonly have distinct concerns and issues compared with older women, including queries regarding fertility, contraception and pregnancy. Further, they are more likely than older women to have questions regarding potential side effects of therapy and risk of relapse or a new primary. In addition, many will have symptoms associated with treatment and they present a management challenge. Reproductive medicine specialists and gynaecologists commonly see these women either shortly after initial diagnosis or following adjuvant therapy and should be aware of current management of breast cancer, the options for women at increased genetic risk, the prognosis of patients with early stage breast cancer and how adjuvant systemic treatments may impact reproductive function. METHODS: No systematic literature search was done. The review focuses on the current management of breast cancer in young women and the impact of treatment on reproductive function and subsequent management. With reference to key studies and meta-analyses, we highlight controversies and current unanswered questions regarding patient management. RESULTS: Chemotherapy for breast cancer is likely to negatively impact on reproductive function. A number of interventions are available which may increase the likelihood of future successful pregnancy, but the relative safety of these interventions is not well established. For those who do conceive following breast cancer, there is no good evidence that pregnancy is detrimental to survival. We review current treatment; effects on reproductive function; preservation of fertility; contraception; pregnancy; breastfeeding and management of menopausal symptoms following breast cancer. CONCLUSION: This paper provides an update on the management of breast cancer in young women and is targeted at reproductive medicine specialists and gynaecologists.