Background Fertility preservation is recognised by WHO, UNICEF and the UN SDGs as a fundamental health right. Yet most oncofertility guidelines are not tailored to children, adolescents and young adults (CAYA) or to local system capacity, causing fragmented implementation, inequitable access and weak survivorship pathways. This paper describes new CAYA guidelines development and implementation strategies for Australia and New Zealand (ANZ) designed to close these gaps and build regional capacity. Methods In 2022, a bi-national consortium of clinicians, researchers, survivors and advocacy partners across paediatric and adult sectors initiated the first CAYA-specific oncofertility guideline in ANZ. Priorities were informed via multi-round Delphi panels including consumers. All 10 Australian paediatric oncology centres were invited to co-design oncofertility SOPs (Standard Operating Procedures) to support implementation. Data from focus groups were thematically analysed using the RE-AIM framework to assess acceptability, adoption, barriers and sustainability. Workforce development was embedded through 10 multidisciplinary working groups and 54 systematic reviews across surgical, clinical, psychosocial and health-system domains. Results Delphi achieved strong consensus (>85%) on framework, purpose and target populations. Risk of bias tools ensured methodological rigour, and external clinical, research and consumer review supported transparency and adoption. Reviews confirmed scarce paediatric/adolescent-specific evidence. Centre engagement produced SOPs in 9/10 paediatric oncology centres covering referral pathways, counselling timelines, governance and expertise, tailored to local readiness yet aligned with international frameworks. The process strengthened workforce capacity, fostered cross-sector collaboration, mentored early-career researchers and established a sustainable ANZ oncofertility network. Conclusion This initiative represents the first coordinated effort to translate global reproductive rights principles into a regional, equity-focused oncofertility guideline for CAYA. Integrating guidelines with centre-specific SOPs creates a practical advocacy platform, evidence-based standards plus real-world insights, for national adoption. Embedding consumer voices, local SOPs and early-career development is closing practice gaps and shaping the future workforce. The ANZCO model sets a benchmark for youth-centred survivorship care and offers a globally relevant framework for embedding reproductive rights in adolescent and young-adult cancer survivorship.

Menopausal symptoms are common in cancer survivors, often affecting their daily lives. Despite available treatments, few have access to adequate symptom management. Novel approaches, such as those incorporating symptom assessment and tailored or stepped approaches, are needed. This study explored perceived enablers and barriers to using an online patient-driven stepped-care platform to screen for and manage menopausal symptoms. Women with a history of cancer were invited through partner organisations by email or social media. Participants completed semi-structured interview based on a theoretical domain framework and the capability, opportunity, and motivation-behavior model. Transcripts were coded into the 14 theoretical domains. Belief statements were analysed into themes and categorised as enablers or barriers. Twenty participants (aged 30–75) were interviewed. Most were Australian-born (n = 18), held vocational training or bachelor’s degree (n = 12), and were employed (n = 11). The most common cancer experienced was breast (n = 6), most had received chemotherapy (n = 16), were pre-menopausal before treatment (n = 13) and reported hot flushes or vaginal dryness (n = 14 each). Twenty-eight themes were identified. Enablers included high confidence in using mobile technologies, a user-friendly platform, and their role as “cancer survivor” to self-manage symptoms. Barriers included low awareness of the stepped-care concept, patient-related comorbidities, and time constraints. The platform’s concept was viewed positively and as important, with high intention to use and follow recommended pathways. This study provides insights into factors that could influence survivors’ engagement with the platform. Findings will guide the prototype development.

Menopausal symptoms after cancer (MSAC) are common and can affect overall quality of life. Cancer survivors experience a variety of symptoms for which they may seek support from healthcare professionals (HCPs). Yet, managing MSAC may be challenging for some HCPs. Therefore, understanding HCPs’ perspectives and challenges in providing MSAC care could help propose solutions to improve care provision. Using semi-structured, one-on-one interviews, we explored the perspectives and challenges of 20 HCPs from a range of specialties involved in the care of women with MSAC. Interviews were transcribed and analyzed using a reflexive thematic approach with NVivo v12. Twenty HCPs aged 37–68 years were interviewed. The sample comprised females (n = 17), with primary care physicians being the largest HCP grouping (n = 6), of whom half were MSAC specialists. Participants’ clinical experience ranged from 1 to 35 years (19.95 ± 9.88), and their experience in managing MSACs ranged from 3 to 35 years (14.25 ± 8.69). Five themes with 10 subthemes were identified: (1) contested view of menopause after cancer; (2) HCPs’ resilience in patient-centred care; (3) multidisciplinary patient care; (4) trial, adaptation, and the search for symptom relief; and (5) care constrained by uncertainty and risk. HCPs recognized the substantial burden of MSAC and have adopted patient-centred care and multidisciplinary approaches. However, the confidence in prescribing menopausal hormone therapy was identified as an area for improvement in clinical practice. For all categories of HCPs, upskilling through targeted education and decision-support tools may improve care. For cancer survivors, these findings indicate that HCPs recognise the burden of menopausal symptoms after cancer and that improvements in clinician education, decision‑support tools and clearer referral pathways should translate into timelier, evidence‑informed care (including considered use of MHT where appropriate), better multidisciplinary support and shared decision‑making — all of which aim to reduce symptom burden and improve quality of life.

BACKGROUND:The delivery of clinical care services using personalized health approaches is an integral component of cancer care. This review synthesized evidence on the efficacy and cost-effectiveness of stepped-care interventions delivered to manage therapy-related symptoms in cancer populations compared with care as usual (CAU). METHODS:Systematic searches were conducted in MEDLINE, PsycINFO, Embase, Web of Science, Cochrane Library, National Health Service Economic Evaluation Database, and EconLit to identify studies published from January 2010 to November 2024. Peer-reviewed studies that reported outcomes of stepped interventions and CAU were included, and quality appraisal was performed using the Cochrane Risk of Bias 2 and the Risk of Bias in Non-Randomised Studies-of Interventions tools. RESULTS:The review summarizes a total of 22 studies, involving 4588 unique adult cancer survivors. Fourteen studies identified statistically significant improvements in symptom severity and clinical outcomes comparable to those of CAU. The stepped-care group showed reduced mean severity scores for distress, insomnia, and fatigue, as well as improved stress reactions and emotional reactivity, and fewer palliative care visits. The low uptake of the intervention and inadequate assessment of comorbid symptoms have hindered the ability to draw conclusive recommendations across several studies. Four studies evaulated the cost-effectiveness of stepped-care interventions compared to CAU. Two of these studies reported significant cost savings of approximately €19 991 for each point improvement on the distress scale and lower incremental costs of approximately €3950 associated with stepped-care interventions. CONCLUSIONS:This review highlights the potential clinical and economic benefits of implementing stepped-care interventions to reduce the severity of cancer-related symptoms. Further research is warranted to assess the long-term effectiveness, cost-effectiveness, and implementation feasibility of stepped-care interventions in real-world clinical care settings serving cancer populations with diverse needs.

Menopausal symptoms are common after cancer treatment, with wide-ranging impacts on cancer survivors’ daily living. While evidence shows that cancer survivors have menopause-related needs, these have not been synthesised. This systematic review aims to identify cancer survivors’ unmet needs in managing menopausal symptoms. The study was registered with the Prospective Register for Systematic Reviews (CRD42024464668). We searched four databases (MEDLINE, Embase, PsycINFO, CINAHL) for original qualitative or quantitative research published in English between 2013 and 2025, and focusing on cancer survivors’ unmet menopause-related needs. Manual searches of reference lists were also conducted. Quantitative studies were reported descriptively, while qualitative data was analysed using inductive thematic analysis. The search returned 8256 abstracts, of which, 20 studies (13 qualitative and 7 quantitative) met the inclusion criteria. Three key themes were identified regarding unmet needs: treatment, support, and information. Treatment needs involved survivors untreated, those finding treatment ineffective, and desire for more options. Between 26 and 80

BACKGROUND:Germline genomic sequencing (GGS) is increasingly offered to children with cancer. We explored families' experiences of consent, result-disclosure, and satisfaction in the PREDICT study, a standalone trio-GGS study of unselected, newly-diagnosed patients ( ≤ 21 yrs). METHODS:Using a convergent parallel mixed-methods design, parents and children ( ≥ 12 yrs) completed questionnaires at baseline/post-consent (T0), results-return (T1), and for parents, one-year post-enrolment (T2). Parents completed T1 interviews. RESULTS:187/248 parents (mean:40.4 yrs) and 19/32 children (mean:14.9 yrs) from 128/144 families participated; 49 parents were interviewed. Few reported thoroughly reading consent materials and consent-related distress was low, though higher among parents with lower-income (p = 0.001) or below-average genetics knowledge (p = 0.027). At result-return, participants reported moderate distress, with no differences by result type (p = 0.118). Satisfaction was high (median: parents 98/100, children 87/100), 96% of parents and 60% of children would recommend PREDICT, and parents reported minimal regret (mean:15.74/100). Qualitative data revealed that cancer diagnosis-related distress influenced consent comprehension and potentially impeded parents' ability to consider study implications for themselves. Emotional reactions to results ranged from relief to distress, regardless of findings. Communication and trust shaped experiences. CONCLUSIONS:Consent for trio-GGS at cancer diagnosis is complex, requiring flexible, tailored processes. Clear, timely communication from trusted clinicians is key to improving family experiences.

Abstract Study question What are the characteristics and treatment outcomes of women who undertook planned egg freezing (PEF) in Australia and New Zealand between 2009 and 2023? Summary answer There has been an average yearly increase in the uptake of PEF of 35%, with most women undergoing a single PEF procedure in their mid-thirties. Given ten years follow-up a little over one in four women return, with nearly half of those using donor sperm and one-third achieving a live birth. What is known already PEF, where women freeze their eggs as a strategy to preserve fertility, has increased dramatically in high income countries in the last decade. Despite the rapid uptake of PEF, there remains limited information to guide women, clinicians and policy makers regarding the characteristics of women undertaking this procedure and treatment outcomes. Study design, size, duration A retrospective population-based cohort study of all women who undertook PEF in Australia and New Zealand between 2009 and 2023, including their subsequent return to thaw their eggs and treatment outcomes. Where women returned to utilise their eggs, all subsequent embryo transfer procedures were linked enabling calculation of live birth rates per woman. Participants/materials, setting, methods 20,209 women who undertook PEF in Australia and New Zealand between 2009 and 2023 including 1,657 women who returned to thaw their eggs. Main results and the role of chance There has been a huge increase in uptake of PEF, from 55 women in 2009 to 4,919 in 2023. Women who freeze their eggs are typically aged 34-38 years (interquartile range) and nulliparous (98.6%). For women with at least 10 years follow-up (i.e. undertook PEF in 2009-13; N=514), 27.9% returned and thawed their frozen eggs (average time to return: 4.9 years). This reduced to 22.1% in those with at least 5 years follow-up (i.e. undertook PEF in 2009-2018; N=4,288). Of those who used their frozen eggs, 47% used donor sperm. After at least two years follow up, 33.9% had a live birth, rising over time to 37.8% for eggs thawed between 2019-2021. Limitations, reasons for caution In the timeframe 2009-2019 we did not have information on whether egg freezing occurred because of a cancer diagnosis, a cohort we wished to exclude from the study. As a result, for this timeframe we weighted observations by the probability that egg freezing occurred due to cancer, with the prediction model developed on the years 2020-2023. Wider implications of the findings This study provides recent and comprehensive data on PEF to guide prospective patients and clinicians and inform policy. The exponential growth in PEF in Australia and New Zealand mirrors trends in other high-income countries, suggesting a doubling time of 2-3 years. Study findings highlight the need for setting realistic expectations about the likelihood of returning to use frozen eggs and live birth rates. Study funding/competing interest(s) 2020-2025 MRFF Emerging Priorities and Consumer Driven Research initiative: EPCD000014

Background In-vitro fertilisation (IVF) add-ons are adjuncts to IVF that are usually used with the hope of increasing the chance of IVF success. Prominent information sources for patients, including IVF clinic websites and social media, often contain misleading information about add-ons, overstating potential benefits and omitting information about risks and cost. The aim of this study was to codesign an evidence-based resource about IVF add-ons, and to evaluate its acceptability and effect on patients’ understanding of the evidence through an online randomised trial. Methods In a parallel-group, single-blinded, randomised trial, Australian patients undergoing IVF were recruited via social media between March 19 and April 6, 2025, and randomly assigned them to view the new resource or control content generated from synthesising information from high-ranking Google search results. Participants were randomly assigned centrally (1:1:1:1:1:1) using the randomisation function within Qualtrics software, to receive study or control information regarding one of three add-ons (EmbryoGlue, intralipid infusion, or endometrial receptivity testing). Three add-ons were selected to represent different evidence scenarios: evidence of benefit (EmbryoGlue); unclear evidence (intralipid infusion); and evidence of no benefit (endometrial receptivity testing). The primary outcome was gist comprehension measured using a five-item questionnaire that assessed participants’ understanding of the effect of these IVF add-ons on the chance of pregnancy, miscarriage, and live birth, the quality of the evidence, and possible side-effects (range 0–10). The analysis was conducted using pooled data from the three add-on groups. Analyses were performed following the intention-to-treat principle, including all randomly assigned participants, with multiple imputation for missing data. The trial was prospectively registered on ClinicalTrials.gov (NCT06885151). Findings 1217 eligible participants were randomly assigned (606 to the evidence-based website group and 611 to the control group, with 899 (74%) providing outcome data. Most participants were women (1202 [99%]), aged 31–40 years (869 [71%]), had undergone IVF previously (1076 [88%]) and were planning future IVF treatment (1156 [95%]). Mean gist comprehension was substantially higher in the evidence-based website group (6·1 [SD 3·0] vs the control group of 2·2 [2·4]; mean difference 3·8 [95% CI 3·5–4·2]; standardised mean difference 1·42 [95% CI 1·27–1·57]; p<0·0001). Interpretation The evidence-based IVF website improved patients’ understanding of the benefits, risks, and evidence quality of IVF add-ons, compared with typical online information about these add-ons. This resource should be used by patients and clinicians to support informed decision making about add-on use. Funding The Australian National Health and Medical Research Council and the University of Melbourne, Australia.

Treatment-induced ovarian function loss is a significant concern for many young patients with breast cancer. Accurately predicting this risk is crucial for counselling young patients and informing their fertility-related decision-making. However, current risk prediction models for treatment-related ovarian function loss have limitations. To provide a broader representation of patient cohorts and improve feature selection, we combined retrospective data from six datasets within the FoRECAsT (Infertility after Cancer Predictor) databank, including 2679 pre-menopausal women diagnosed with breast cancer. This combined dataset presented notable missingness, prompting us to employ cross imputation using the k-nearest neighbours (KNN) machine learning (ML) algorithm. Employing Lasso regression, we developed an ML model to forecast the risk of treatment-related amenorrhea as a surrogate marker of ovarian function loss at 12 months after starting chemotherapy. Our model identified 20 variables significantly associated with risk of developing amenorrhea. Internal validation resulted in an area under the receiver operating characteristic curve (AUC) of 0.820 (95% CI: 0.817-0.823), while external validation with another dataset demonstrated an AUC of 0.743 (95% CI: 0.666-0.818). A cutoff of 0.20 was chosen to achieve higher sensitivity in validation, as false negatives-patients incorrectly classified as likely to regain menses-could miss timely opportunities for fertility preservation if desired. At this threshold, internal validation yielded sensitivity and precision rates of 91.3% and 61.7%, respectively, while external validation showed 92.9% and 60.0%. Leveraging ML methodologies, we not only devised a model for personalised risk prediction of amenorrhea, demonstrating substantial enhancements over existing models but also showcased a robust framework for maximally harnessing available data sources.

RESEARCH QUESTION:What are the significant decision-making pathways for oocyte disposition outcomes for elective egg freezers? DESIGN:Observational cross-sectional study undertaken between May and November 2023. Questions were derived from the Prototype Willingness Model with six additional theoretical constructs informed from qualitative research and analysed using structured equation modelling. Patients (n = 175, aged ≥18 years, living in Australia) had electively frozen their eggs with at least one currently in storage. Primary outcomes were willingness to donate to friends or family members; a couple advertising online for an egg donor; an egg bank/fertility clinic; research; or discard or reclaim the eggs. RESULTS:Each outcome had a distinct decision pathway. All variables were significant for at least one outcome. The models accounted for a substantial variance in willingness to donate (from 45% [research] to 75% [egg bank/fertility clinic]. Across all outcomes, a positive attitude was the strongest enabling factor. Attitude was informed by factors such as concern about other people raising their donor child; desire to meet recipient; empathy; and concern for wellbeing of donor child, depending on the outcome choice. When donating to research, what others thought of their choice was a significant enabler. Feeling favourably towards the typical woman who chooses to discard their eggs was an enabling factor for discarding eggs. CONCLUSIONS:As disposition decisions are individual and personal, the study highlights the importance of counselling for elective egg freezers when considering disposition options. The development of support tools is recommended to help patients navigate this complex decision.

What are the psychosocial and behavioural consequences of anti-müllerian hormone (AMH) testing in women without a history of infertility? AMH testing influenced emotional well-being and reproductive decision-making, with those who perceived their AMH as ‘low’ experiencing greater distress, regret, and behavioural changes. AMH is widely used as a marker of ovarian reserve; however, it does not predict natural fertility or future reproductive potential. Despite this, many women undergo testing outside of clinical infertility contexts, often without adequate counselling regarding its limitations or implications. Prior studies suggest that misunderstanding AMH results may contribute to unwarranted anxiety and affect reproductive decision-making. A cross-sectional, anonymous online survey of 251 women with no history of infertility who had undergone AMH testing within the past five years. Participants aged 18–55 years with no prior history of infertility were recruited via social media advertising and women’s health organizations. The survey assessed their psychosocial responses to their AMH test result, reproductive decision-making, understanding of AMH, and interactions with healthcare providers. Among 251 participants (mean age: 36 years, SD: 4.7), mean age at first AMH test was 33 years (SD: 4.3). The most common reasons for testing were considering pregnancy soon (29%) and curiosity about fertility (19%). The vast majority (94%) correctly identified AMH as a measure of ovarian reserve, but 20% incorrectly believed it assessed fertility. Almost half (47%) perceived their AMH result as ‘low’, and this was associated with greater emotional distress (p < 0.001) and increased decisional regret about testing (p = 0.038). Those with a perceived ‘low’ AMH result were also more likely to bring forward conception plans (p < 0.001), pursue elective egg freezing (p < 0.001), or consider fertility treatment (p < 0.001). Findings rely on self-reported perceptions and are subject to recall bias. The sample may not be representative of all women undergoing AMH testing, as participation was voluntary, and recruitment was conducted online. Despite evidence refuting AMH’s ability to predict natural fertility, many women undergo testing without appropriate guidance, leading to distress and potentially medically unnecessary interventions. These findings highlight ethical concerns surrounding AMH testing in women without infertility and underscore the need for better-informed counselling and evidence-based guidance before testing. No

Introduction All those born with functioning ovaries will eventually experience menopause, and many will be symptomatic. However, significant gaps in the evidence base for menopause care remain. This National Institute for Health and Care Research James Lind Alliance Menopause Priority Setting Partnership (MAPS) will engage with clinicians and those with lived experience globally to determine the leading priorities for future menopause research.Methods and analysis MAPS will follow the established James Lind Alliance methodology which has already resulted in over 100 ‘top 10’ research priorities across health domains. It will be led by a steering group comprised of clinicians and lived experience members. Leveraging the networks of steering group members and partner organisations, the priority setting partnership will identify evidence uncertainties using an online survey. Evidence checking will be undertaken to determine which questions have already been answered. Prioritisation will be done in two stages, initially by online survey and then at a face-to-face workshop.Ethics and dissemination Ethical approval was not required. The final top 10 priorities for menopause, as ranked by stakeholders at the final consensus workshop, will be disseminated in the relevant peer-reviewed journals. A final report will be available on the MAPS and James Lind Alliance websites. The leading priorities will inform the future global research agenda for menopause.

Recent international guidelines in child, adolescent, and young adult (CAYA) oncofertility uniformly recommend fertility discussion before cancer treatment, and individualised decision-making for fertility preservation procedures. Yet significant disparities remain across the globe. Various aspects of oncofertility care are in different stages of translation and the boundaries between experimental, innovative and established techniques are not always clear to patients, clinicians and policymakers. This poses barriers for implementation of high-quality care and for the allocation of resources required. International and national guidelines play a key role in promoting equitable care. In 2019, members of the Australian New Zealand Consortium in CAYA Oncofertility (ANZCO) called for national guidelines to standardise care and improve connectedness amongst Australian New Zealand Haematology Oncology Group (ANZCHOG) centres. A clearer understanding of the similarities and differences amongst key guidelines was deemed useful for closing knowledge gaps in the local context and identifying the priorities of key stakeholders with respect to guideline development. This paper provides an overview of CAYA oncofertility guidance from six peak bodies from four continents (Australia, Europe, North America, Asia). A review of recommendations and levels of evidence followed by a Delphi consensus of ANZCO members to develop priority questions is described. ANZCHOG guidelines tailored to the local CAYA context were deemed a high priority, in order to provide a common purpose, direction and governance for providers of paediatric care.

ABSTRACT Background Germline genomic sequencing (GS) is increasingly offered to children with cancer. To optimize integration into routine care, assessment of implementation barriers and a better understanding of healthcare professionals' perspectives and experiences are needed. Methods Healthcare professionals delivered trio germline GS to newly diagnosed pediatric and adolescent patients with cancer via the PREDICT completed questionnaires with qualitative and quantitative items. Each study site recorded reasons for eligible families' nonenrolment in PREDICT to identify barriers to recruitment. Quantitative data were analyzed via descriptive statistics, whereas qualitative data underwent inductive content analysis, with results integrated for interpretation. Results Thirty‐three healthcare professionals participated, including 23 oncology professionals and 10 genetic professionals. Healthcare professionals perceived PREDICT as beneficial to participating and future families, and that perceptions of personal benefit and altruism were drivers of family uptake. Concerns included workforce capacity and potential family distress given the trio design and high‐stress diagnosis setting. Barriers to recruitment related to clinical decision‐making, family factors, and logistics. Although most rated their genetics/genomics knowledge as “good,” regarding germline results, few were “very confident” interpreting (29%), explaining (32%), making treatment recommendations (9.7%), and providing psychosocial support to families (29%). They acknowledged a need for further training in these areas for trainees; yet, fewer were interested in training for themselves. Conclusion Successful implementation of routine germline GS will require targeted strategies to address logistical issues and alleviate potential negative psychosocial impacts for families. Recognizing the escalating demand on genetics experts, upskilling of the current workforce and involvement of a broader spectrum of healthcare professionals are warranted.

Purpose When a pregnant woman is diagnosed with cancer, she faces complex and unique challenges while navigating both obstetric and oncological care. Despite often being the primary support for women diagnosed with cancer during pregnancy (CDP), little is known about the experiences of their partners. We undertook an in-depth exploration of the experiences of partners of women diagnosed with CDP in Australia.Methods Semi-structured interviews were conducted with partners of women diagnosed with CDP treated in Australia. Interviews explored partners' inclusion in decision making and communication with health professionals and their own coping experiences. Data were analysed thematically.Results Data from interviews with 12 male partners (N = 12) of women diagnosed with CDP were analysed. Two unique themes relevant to partners were identified: 'Partners require support to adjust to changing roles and additional burdens' and 'Treating the couple as a team facilitates agency and coping, but partners' needs are placed second by all'.Conclusion Partners of women diagnosed with CDP commonly experience unique stressors and a substantial shift in previously established roles across multiple domains including medical advocacy, household coordination and parenting. Partners' coping is interlinked with how the woman diagnosed with CDP is coping. Inclusion of partners in treatment decisions and communications, and considering partners' wellbeing alongside that of the woman with CDP, is likely to be supportive for partners. In turn, this is likely to enhance the quality of support that women diagnosed with CDP receive from their partners.