PARENTS' AND PATIENTS' PERSPECTIVES, EXPERIENCES, AND PREFERENCES FOR GERMLINE GENETIC OR GENOMIC TESTING OF CHILDREN WITH CANCER: A SYSTEMATIC REVIEW.

PURPOSE: Germline testing in pediatric cancer presents opportunities and challenges. Understanding family perspectives, experiences, and preferences will optimize integration into routine care. METHODS: Following PRISMA guidelines, we searched four databases for studies exploring perspectives, experiences, and preferences of parents/caregivers and/or patients regarding germline testing of children with cancer. Qualitative and quantitative data was extracted, organized, and summarized by research question and themes. RESULTS: We identified 2286 unique articles, of which 24 were included. Interest in and uptake of testing was high. Families were motivated by altruism and a desire for inheritance/causation information. Testing barriers included psychological concerns, timing of the testing approach if offered at diagnosis or in a high-risk cancer setting and privacy/discrimination. Testing experiences highlighted challenges yet also positive impacts, with results providing psychological relief and informing proactive decision-making. Timing preferences varied, however allowing time to adjust to a new diagnosis was a common theme. Most wanted to receive as many germline sequencing-related results as possible. CONCLUSION: Findings underscore the importance of integrating germline analyses into pediatric cancer care with flexibility and support for families facing challenges. Where possible, consent should be provided at a time that suits each family's situation with access to information aligning with their needs and preferences. PROSPERO: CRD42023444890.

Eggsurance? A randomized controlled trial of a decision aid for elective egg freezing.

STUDY QUESTION: Does a purpose-designed Decision Aid for women considering elective egg freezing (EEF) impact decisional conflict and other decision-related outcomes? SUMMARY ANSWER: The Decision Aid reduces decisional conflict, prepares women for decision-making, and does not cause distress. WHAT IS ALREADY KNOWN: Elective egg-freezing decisions are complex, with 78% of women reporting high decisional conflict. Decision Aids are used to support complex health decisions. We developed an online Decision Aid for women considering EEF and demonstrated that it was acceptable and useful in Phase 1 testing. STUDY DESIGN, SIZE, DURATION: A single-blind, two-arm parallel group randomized controlled trial was carried out. Target sample size was 286 participants. Randomization was 1:1 to the control (existing website information) or intervention (Decision Aid plus existing website information) group and stratified by Australian state/territory and prior IVF specialist consultation. Participants were recruited between September 2020 and March 2021 with outcomes recorded over 12 months. Data were collected using online surveys and data collection was completed in March 2022. PARTICIPANTS/MATERIALS, SETTING, METHODS: Females aged ≥18 years, living in Australia, considering EEF, proficient in English, and with internet access were recruited using multiple methods including social media posts, Google advertising, newsletter/noticeboard posts, and fertility clinic promotion. After completing the baseline survey, participants were emailed their allocated website link(s). Follow-up surveys were sent at 6 and 12 months. Primary outcome was decisional conflict (Decisional Conflict Scale). Other outcomes included distress (Depression Anxiety and Stress Scale), knowledge about egg freezing and female age-related infertility (study-specific measure), whether a decision was made, preparedness to decide about egg freezing (Preparation for Decision-Making Scale), informed choice (Multi-Dimensional Measure of Informed Choice), and decision regret (Decision Regret Scale). MAIN RESULTS AND THE ROLE OF CHANCE: Overall, 306 participants (mean age 30 years; SD: 5.2) were randomized (intervention n = 150, control n = 156). Decisional Conflict Scale scores were significantly lower at 12 months (mean score difference: -6.99 [95% CI: -12.96, -1.02], P = 0.022) for the intervention versus control group after adjusting for baseline decisional conflict. At 6 months, the intervention group felt significantly more prepared to decide about EEF than the control (mean score difference: 9.22 [95% CI: 2.35, 16.08], P = 0.009). At 12 months, no group differences were observed in distress (mean score difference: 0.61 [95% CI: -3.72, 4.93], P = 0.783), knowledge (mean score difference: 0.23 [95% CI: -0.21, 0.66], P = 0.309), or whether a decision was made (relative risk: 1.21 [95% CI: 0.90, 1.64], P = 0.212). No group differences were found in informed choice (relative risk: 1.00 [95% CI: 0.81, 1.25], P = 0.983) or decision regret (median score difference: -5.00 [95% CI: -15.30, 5.30], P = 0.337) amongst participants who had decided about EEF by 12 months (intervention n = 48, control n = 45). LIMITATIONS, REASONS FOR CAUTION: Unknown participant uptake and potential sampling bias due to the recruitment methods used and restrictions caused by the coronavirus disease 2019 pandemic. Some outcomes had small sample sizes limiting the inferences made. The use of study-specific or adapted validated measures may impact the reliability of some results. WIDER IMPLICATIONS OF THE FINDINGS: This is the first randomized controlled trial to evaluate a Decision Aid for EEF. The Decision Aid reduced decisional conflict and improved women's preparation for decision making. The tool will be made publicly available and can be tailored for international use. STUDY FUNDING/COMPETING INTEREST(S): The Decision Aid was developed with funding from the Royal Women's Hospital Foundation and McBain Family Trust. The study was funded by a National Health and Medical Research Council (NHMRC) Project Grant APP1163202, awarded to M. Hickey, M. Peate, R.J. Norman, and R. Hart (2019-2021). S.S., M.P., D.K., and S.B. were supported by the NHMRC Project Grant APP1163202 to perform this work. R.H. is Medical Director of Fertility Specialists of Western Australia and National Medical Director of City Fertility. He has received grants from MSD, Merck-Serono, and Ferring Pharmaceuticals unrelated to this study and is a shareholder of CHA-SMG. R.L. is Director of Women's Health Melbourne (Medical Practice), ANZSREI Executive Secretary (Honorary), RANZCOG CREI Subspecialty Committee Member (Honorary), and a Fertility Specialist at Life Fertility Clinic Melbourne and Royal Women's Hospital Public Fertility Service. R.A.A. has received grants from Ferring Pharmaceuticals unrelated to this study. M.H., K.H., and R.J.N. have no conflicts to declare. TRIAL REGISTRATION NUMBER: ACTRN12620001032943. TRIAL REGISTRATION DATE: 11 August 2020. DATE OF FIRST PATIENT'S ENROLMENT: 29 September 2020.

The Australian New Zealand Consortium in Children, Adolescents, and Young Adults Oncofertility action plan.

International and national oncofertility networks, including the US-led Oncofertility Consortium, FertiProtekt, and the Danish Network, have played pivotal roles in advancing the discipline of oncofertility over the last decade. Many other countries lack a shared approach to pediatric oncofertility health service delivery. This study aims to describe baseline oncofertility practices at Australian New Zealand Children's Haematology/Oncology Group centers in 2019-2021, describe binational priorities for care, and propose a 5-year action plan for best practice to be implemented by the newly formed Australian New Zealand Consortium in Children, Adolescents, and Young Adults (CAYA) Oncofertility (ANZCO).

Attitudes, knowledge and practice regarding the anti-müllerian hormone test among general practitioners and reproductive specialists: A cross-sectional study.

OBJECTIVE: To describe clinicians' attitudes, knowledge and practice relating to the anti-müllerian hormone (AMH) test. DESIGN: Cross-sectional nationwide survey. SETTING: Australia. POPULATION OR SAMPLE: A total of 362 general practitioners (GPs), gynaecologists and reproductive specialists. METHODS: Clinicians were recruited through relevant professional organisations, with data collected from May 2021 to April 2022. MAIN OUTCOME MEASURES: Clinicians' attitudes, knowledge and practice relating to the AMH test, measured using multiple choice, Likert scales and open-ended items. RESULTS: Fifteen percent of GPs (n = 27) and 40% of gynaecologists and other specialists (n = 73) order at least one AMH test per month. Specialists reported raising the idea of testing most of the time, whereas GPs reported that patient request was more common. Half of clinicians lacked confidence interpreting (n = 182, 51%) and explaining (n = 173, 48%) an AMH result to their patients. Five percent (n = 19) believed the test was moderately/very useful in predicting natural conception/birth and 22% (n = 82) believed the same for predicting premature menopause, despite evidence that the test cannot reliably predict either. Forty percent (n = 144) had previously ordered the test to help with reproductive planning and 21% (n = 75) to provide reassurance about fertility. CONCLUSIONS: Clinicians reported use of AMH testing in clinical circumstances not supported by the evidence. With the proliferation of direct-to-consumer testing, efforts to support clinicians in the judicious use of testing and effectively navigating patient requests are needed.

Experiences of cohabiting partners of women diagnosed with cancer during pregnancy: a qualitative study.

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.

The "most bothersome symptom" construct: A qualitative study of Australians living with endometriosis.

INTRODUCTION: "Improvement in the most bothersome symptom" was recently selected as a core outcome for endometriosis intervention trials. This study aimed to explore the applicability of the construct of "symptom bother" in representing the lived experiences of people with endometriosis. MATERIAL AND METHODS: Semi-structured interviews were conducted to understand the meaning of "symptom bother" and related constructs. Eighteen interviews were conducted: 14 among people with a surgical diagnosis of endometriosis who were recruited from the community, and four with people who were recruited from a private gynecology clinic who had either a confirmed diagnosis or a high suspicion of the disease. All interviews were audio recorded, transcribed verbatim, and analyzed thematically. RESULTS: Three primary themes were identified: (1) endometriosis symptoms and priorities vary with time and context, (2) endometriosis symptoms impair normal daily functioning, (3) endometriosis symptoms are more than just a "bother." The concept of "bother" to describe endometriosis symptoms did not resonate with most participants. Whilst "bother" was familiar language, it did not encompass the broader implications of living with endometriosis. Participants felt "bother" implied emotional distress, lacking a full understanding of the consequences of the disease. Instead, "symptom impact" was endorsed, allowing participants to quantify and objectively assess their symptoms, free from negative connotations. CONCLUSIONS: This was the first qualitative study to explore "symptom bother" among people living with endometriosis. Instead of "bother," "impact" was widely endorsed as a suitable construct. This term more appropriately captured the broad ways in which endometriosis symptoms impair daily functioning.

Community awareness and use of anti-Müllerian hormone testing in Australia: a population survey of women.

STUDY QUESTION: What is the anti-Mullerian hormone (AMH) test usage, awareness, and perceived reasons for testing in a representative community sample of women in Australia? SUMMARY ANSWER: : Among women aged 18-55 years, 13% had heard about AMH testing and 7% had had an AMH test, with the top three reasons for testing including due to infertility investigations (51%), considering pregnancy and wanting to understand their chances (19%) or to find out if a medical condition had affected fertility (11%). WHAT IS KNOWN ALREADY: The growing availability of direct-to-consumer AMH testing has raised concerns about overuse, however as most AMH tests are paid for privately by consumers, data on test usage is not publicly available. STUDY DESIGN, SIZE, DURATION: National cross-sectional survey of 1773 women, conducted in January 2022. PARTICIPANTS/MATERIALS, SETTING, METHODS: Females aged 18-55 years were recruited from the representative 'Life in Australia' probability-based population panel and completed the survey online or by telephone. Main outcome measures included if and how participants had heard about AMH testing, whether they had ever had an AMH test, main reason for testing and test access. MAIN RESULTS AND THE ROLE OF CHANCE: Of the 2423 women who were invited 1773 responded (73% response rate). Of these, 229 (13%) had heard about AMH testing and 124 (7%) had had an AMH test. Testing rates were highest among those currently aged 35-39 years (14%) and associated with educational attainment. Almost all accessed the test through their general practitioner or fertility specialist. Reasons for testing were: part of an infertility investigation (51%), considering pregnancy and wanting to understand chances of conceiving (19%), finding out if a medical condition had affected fertility (11%), curiosity (9%), considering egg freezing (5%), and considering delaying pregnancy (2%). LIMITATIONS, REASONS FOR CAUTION: Although the sample was large and mostly representative, it was over-represented by people holding a university degree and under-represented by people aged 18-24, however, we used weighted data where possible to account for this. All data were self-reported so there is a risk of recall bias. The number of survey items was also restricted, so the type of counselling women received prior to testing, reasons for declining an AMH test or test timing were not measured. WIDER IMPLICATIONS OF THE FINDINGS: Whilst most women reported having an AMH test for appropriate reasons, about one third had it for reasons not supported by evidence. Public and clinician education about the lack of utility of AMH testing for women not undergoing infertility treatment is needed. STUDY FUNDING/COMPETING INTEREST(S): This project was supported by a National Health and Medical Research Council (NHMRC) Centre for Research Excellence grant (1104136) and Program grant (1113532). T.C. is supported by an NHMRC Emerging Leader Research Fellowship (2009419). B.W.M. reports research funding, consultancy and travel support from Merck. D.L. is the Medical Director of City Fertility NSW and reports consultancy for Organon, Ferring, Besins and Merck. The authors have no other competing interests. TRIAL REGISTRATION NUMBER: N/A.

Exploring the experiences and priorities of women with a diagnosis of ovarian cancer.

PURPOSE: Ovarian cancer is the third most common gynaecological cancer among women, yet remains under-researched. Past studies suggest that women who present with ovarian cancer have more supportive care needs compared to women experiencing other gynaecological cancers. This study explores the experiences and priorities of women with a diagnosis of ovarian cancer and whether age may influence these needs and experiences. METHODS: Participants were recruited by a community organization, Ovarian Cancer Australia (OCA), via a social media campaign promoted on Facebook. Participants were asked to rank priorities around living with ovarian cancer, and to endorse which supports and resources they had used to address those priorities. Distributions of priority rankings and resource use were compared by age (19-49 vs. 50+ years). RESULTS: Two hundred and eighty-eight people completed the consumer survey and most respondents were 60-69 years (33.7%). Priorities did not vary by age. Fear of cancer recurrence was identified by 51% respondents as the most challenging aspect of having ovarian cancer. Compared with older respondents, a higher proportion of young participants were more inclined to use a mobile app version of the OCA resilience kit (25.8% vs 45.1%, p=0.002) and expressed interest in using a fertility preservation decision aid (2.4% vs 25%, p<0.001). CONCLUSION: Fear of recurrence was participants' primary concern, presenting an opportunity to develop interventions. Information delivery needs to consider age-specific preferences to better reach the target audience. Fertility is more important to younger women and a fertility preservation decision aid may address this need.

The development and phase 1 evaluation of a Decision Aid for elective egg freezing.

BACKGROUND: Elective egg freezing decisions are complex. We developed a Decision Aid for elective egg freezing and conducted a phase 1 study to evaluate its acceptability and utility for decision-making. METHODS: The online Decision Aid was developed according to International Patient Decision Aid Standards and evaluated using a pre/post survey design. Twenty-six Australian women aged 18-45 years, interested in receiving elective egg freezing information, proficient in English, and with access to the internet were recruited using social media and university newsletters. Main outcomes were: acceptability of the Decision Aid; feedback on the Decision Aid design and content; concern raised by the Decision Aid, and; utility of the Decision Aid as measured by scores on the Decisional Conflict Scale and on a study-specific scale assessing knowledge about egg freezing and age-related infertility. RESULTS: Most participants found the Decision Aid acceptable (23/25), balanced (21/26), useful for explaining their options (23/26), and for reaching a decision (18/26). Almost all reported satisfaction with the Decision Aid (25/26) and the level of guidance  it provided (25/26). No participant reported serious concerns about the Decision Aid, and most would recommend it to other women considering elective egg freezing (22/26). Median Decisional Conflict Scale score decreased from 65/100 (Interquartile range: 45-80) pre-Decision Aid to 7.5/100 (Interquartile range: 0-37.5) post-Decision Aid review (p < 0.001). Median knowledge score increased from 8.5/14 (Interquartile range: 7-11) pre-Decision Aid to 11/14 (Interquartile range: 10-12) post-Decision Aid review (p = 0.01). CONCLUSION: This elective egg freezing Decision Aid appears acceptable and useful for decision-making. It improved knowledge, reduced decisional conflict and did not raise serious concerns. The Decision Aid will be further evaluated using a prospective randomised control trial. STUDY REGISTRATION: ACTRN12618001685202 (retrospectively registered: 12 October 2018).

Information and decision support needs: A survey of women interested in receiving planned oocyte cryopreservation information.

PURPOSE: Identifying the information and decision support needs of women interested in receiving planned oocyte cryopreservation (POC) information. METHODS: An online survey of Australian women, aged 18-45, interested in receiving POC information, proficient in English, with internet access. The survey covered POC information sources, information delivery preferences, POC and age-related infertility knowledge (study-specific scale), Decisional Conflict Scale (DCS), and time spent considering POC. Target sample size (n=120) was determined using a precision-based method. RESULTS: Of 332 participants, 249 (75%) had considered POC, whilst 83 (25%) had not. Over half (54%) had searched for POC information. Fertility clinic websites were predominately used (70%). Most (73%) believed women should receive POC information between ages 19-30 years. Preferred information providers were fertility specialists (85%) and primary care physicians (81%). Other methods rated most useful to deliver POC information were online. Mean knowledge score was 8.9/14 (SD:2.3). For participants who had considered POC, mean DCS score was 57.1/100 (SD:27.2) and 78% had high decisional conflict (score >37.5). In regression, lower DCS scores were associated with every 1-point increase in knowledge score (-2.4; 95% CI [-3.9, -0.8]), consulting an IVF specialist (-17.5; [-28.0, -7.1]), and making a POC decision (-18.4; [-27.5, -9.3]). Median time to decision was 24-months (IQR: 12.0-36.0) (n=53). CONCLUSION: Women interested in receiving POC information had knowledge gaps, and wanted to be informed about the option by age 30 years from healthcare professionals and online resources. Most women who considered using POC had high decisional conflict indicating a need for decision support.

Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families.

Who is managing menopausal symptoms, sexual problems, mood and sleep disturbance after breast cancer and is it working? Findings from a large community-based survey of breast cancer survivors.

PURPOSE: To determine the nature and severity of vasomotor symptoms, sexual problems, mood and sleep disturbance in community-dwelling breast cancer patients, whether and where they received treatment for these symptoms and their satisfaction with treatment received. METHODS: Online cross-sectional survey distributed through Breast Cancer Network Australia (BCNA). RESULTS: 524/2286 women responded to the invitation to participate. Of these, 74% (385/523) reported symptoms of interest and were included in the analysis. Mean age was 55.2 years and mean time since breast cancer diagnosis was 5.7 years. Most (66%) had received chemotherapy and were taking endocrine therapy (64%). The most common symptoms were hot flushes/night sweats and sleep disturbance (both 89%), vaginal dryness (75%), mood swings (62%) and sexual problems (60%). Symptoms were mild (21-33%) or moderate (21-38%) in around one third and severe in up to one quarter (8-26%). Symptoms affected the ability to "get on with their life" for 36%, predicted by severity of hot flushes (OR 1.4), sleep disturbance (OR 1.3), mood disturbance (OR 1.3), and sexual problems (OR 1.3). Only 32% were offered treatment, mostly delivered by GPs (33%) or oncologists (26%). Only 49% found this "somewhat effective" and 34% found it ineffective. The majority (60%) wanted more support to manage their symptoms. CONCLUSION: Menopausal symptoms, sexual problems, mood and sleep difficulties are common after breast cancer and often not effectively managed. There is an unmet need for coordinated care providing effective treatments.

Isolation experienced by women with gestational cancer: could peer support and tailored information be the answer?

Women diagnosed with cancer during pregnancy (gestational cancer) are a small but vulnerable population, with experts suggesting they require greater psycho-social support than either other women with cancer or other pregnant women. However, information on their psychological needs remains sparse. This commentary describes our work exploring the psychological needs of women diagnosed with gestational cancer, areas of unmet need we identified, and our recommendations for future programs and research. We conducted in-depth, semi-structured interviews with 23 Australian women diagnosed with gestational cancer in the preceding 5 years. Our findings depicted a group of women for whom cancer diagnosis and treatment had resulted in a sense of isolation and loneliness. Women reported seeking tailored information about their condition and treatments as well as one-on-one peer support with other gestational cancer survivors, which was challenging for them to access and which existing services struggled to provide. To address these unmet needs, innovative solutions may be necessary. Technology has the potential to connect and match women with one-to-one peer support, and research exploring the efficacy and acceptability of such interventions is required. Creative solutions, such as virtual resource hubs monitored or moderated by experts, would potentially meet the information needs of this group. However, as gestational cancer is relatively rare, the development and evaluation of such interventions would require a collaborative effort across multiple sites, as well as international collaboration and data pooling.

Cancer during pregnancy: A qualitative study of healthcare experiences of Australian women.

OBJECTIVES: To identify features enhancing the quality of healthcare experiences for women with gestational cancer, and explore the impact of the heterogeneous Australian healthcare system on those experiences. METHODS: Semi-structured, qualitative interviews were conducted with women diagnosed with any cancer during pregnancy in the last five years. Recruitment occurred during 2018-2019 via social media and professional, clinical and community networks. Questions related to women's experiences of their healthcare, wellbeing and psychosocial needs. Interviews were analysed thematically. RESULTS: Study participants (n = 23) received treatment in the private sector (n = 10), public sector (n = 8), or both (n = 5). Five interview themes were found: Control over healthcare; Trust in clinicians, hospitals and systems; Coordination of care; An uncommon diagnosis; Holistic, future-oriented care. Women were most likely to have had a positive healthcare experience when (a)care was well-coordinated and adjusted to meet their unique needs/challenges, and (b)women perceived their care went beyond their immediate medical needs and encompassed future psychosocial wellbeing, including preparation for postpartum challenges. CONCLUSION: Existing 'usual care' in the public and/or private sector for both the pregnancy and the cancer is insufficient to meet these women's needs. Prioritising psychological wellbeing including psychosocial needs, and communication and planning around fertility and postnatal challenges are essential for this population.

Impact of national guidelines on use of BRCA1/2 germline testing, risk management advice given to women with pathogenic BRCA1/2 variants and uptake of advice.

BACKGROUND: This nationwide study assessed the impact of nationally agreed cancer genetics guidelines on use of BRCA1/2 germline testing, risk management advice given by health professionals to women with pathogenic BRCA1/2 variants and uptake of such advice by patients. METHODS: Clinic files of 883 women who had initial proband screens for BRCA1/2 pathogenic variants at 12 familial cancer clinics between July 2008-July 2009 (i.e. before guideline release), July 2010-July 2011 and July 2012-July 2013 (both after guideline release) were audited to determine reason given for genetic testing. Separately, the clinic files of 599 female carriers without a personal history of breast/ovarian cancer who underwent BRCA1/2 predictive genetic testing and received their results pre- and post-guideline were audited to ascertain the risk management advice given by health professionals. Carriers included in this audit were invited to participate in a telephone interview to assess uptake of advice, and 329 agreed to participate. RESULTS: There were no significant changes in the percentages of tested patients meeting at least one published indication for genetic testing - 79, 77 and 78% of files met criteria before guideline, and two-, and four-years post-guideline, respectively (χ = 0.25, p = 0.88). Rates of documentation of post-test risk management advice as per guidelines increased significantly from pre- to post-guideline for 6/9 risk management strategies. The strategies with the highest compliance amongst carriers or awareness post-release of guidelines were annual magnetic resonance imaging plus mammography in women 30-50 years (97%) and annual mammography in women > 50 years (92%). Of women aged over 40 years, 41% had a risk-reducing bilateral mastectomy. Amongst women aged > 40 years, 75% had a risk-reducing salpingo-oophorectomy. Amongst women who had not had a risk-reducing bilateral mastectomy, only 6% took risk-reducing medication. Fear of side-effects was cited as the main reasons for not taking these medicines by 73% of women. CONCLUSIONS: Guidelines did not change the percentages of tested patients meeting genetic testing criteria but improved documentation of risk management advice by health professionals. Effective approaches to enhance compliance with guidelines are needed to improve risk management and quality of care.

Systematic review of fertility-related psychological distress in cancer patients: Informing on an improved model of care.

OBJECTIVE: Cancer patients experience reproductive concerns from diagnosis through to survivorship. However, research has yet to investigate the degree of fertility-related psychological distress at different treatment time points: diagnosis, treatment, and survivorship. Currently, cancer patients are offered fertility counselling at the time of diagnosis, to assist fertility preservation decision making. A systematic review of the short-term and long-term psychological impact of infertility in cancer patients would inform on an improved, longitudinal model of psychological care. METHODS: A systematic review of the literature was conducted in January 2018 utilising electronic databases Medline, EMBASE, PSYCH Info, Web of Science, and SCOPUS. An initial search identified 708 potentially relevant studies. Literature was assessed that reported on fertility-related psychological distress experienced by male and female cancer patients of reproductive age (<45 years) across oncology treatment time points. RESULTS: A total of 47 papers were included within the final review. Fertility-related psychological distress persists from diagnosis through to survivorship, with cancer patients reporting a range of negative emotional experiences brought about by threatened infertility. In survivorship, reproductive concerns, unfulfilled desire for a child, nulliparous status, and early menopause were linked to higher rates of mental health disorders and psychological distress. CONCLUSIONS: Fertility-related psychological distress is prevalent and persistent in cancer patients and survivors. As such, patients and survivors would greatly benefit from fertility-related psychological support implemented into standard practice from diagnosis through to survivorship. A revised model of care is proposed.

A cluster randomized controlled trial of an online psychoeducational intervention for people with a family history of depression.

BACKGROUND: People with a family history of major depressive disorder (MDD) or bipolar disorder (BD) report specific psychoeducational needs that are unmet by existing online interventions. This trial aimed to test whether an interactive website for people at familial risk for depression (intervention) would improve intention to adopt, or actual adoption of, depression prevention strategies (primary outcome) and a range of secondary outcome measures. METHODS: In this cluster randomised trial, primary care practises were randomised to either provide the link to the intervention or the control website. Primary health care attendees were invited by letter to opt into this study if they had at least one first-degree relative with MDD or BD and were asked to complete online questionnaires at baseline and 2-week follow-up. RESULTS: Twenty general practices were a randomized, and 202 eligible patients completed both questionnaires. Thirty-nine (19.3%) of participants were male and 163 (80.7%) female. At follow-up, compared to controls, the intervention group: (i) were more likely to intend to undergo, or to have actually undergone, psychological therapies (OR = 5.83, 95% CI: 1.58-21.47, p = .008); (ii) had better knowledge of depression risk factors and prevention strategies (mean difference = 0.47, 95% CI: 0.05-0.88, p = .029); and (iii) were more likely to accurately estimate their lifetime risk of developing BD (mean difference = 11.2, 95% CI: -16.52- -5.73, p < .001). There were no statistically significant between-group differences in change from baseline to follow up for any of the remaining outcome measures (Patient Health Questionnaire, Perceived Devaluation-Discrimination Questionnaire and Perceived Risk of Developing MDD). CONCLUSION: The opt-in nature of the study may have led to participation bias, e.g. underrepresentation of males, and hence may limit generalisability to the broader population at familial risk for depression. This is the first website internationally focusing specifically on informational needs of those at familial risk of depression. Our interactive website can play an important role in improving the outcomes of individuals at familial risk for depression. Testing the intervention in other settings (e.g. psychology, psychiatry, genetic counselling) appears warranted. TRIAL REGISTRATION: The study was prospectively registered with the Australian and New Zealand Clinical Trials Group (Registration no: ACTRN12613000402741 ).

Assessing the medical workforces perceived barriers to the prescription of risk-reducing medication for women at high-risk of breast cancer.

This study aims to determine the attitudes and barriers of Australian oncology health professionals towards using tamoxifen as a breast cancer risk-reducing medication (RRM). Our target group was health professionals involved in breast cancer risk assessment or treatment. Members of relevant medical organizations in Australia and New Zealand were invited to participate in a web-based survey assessing: their attitudes towards tamoxifen as a RRM; which health professionals they felt were responsible for initiating and monitoring women on RRM and their views on workforce issues related to RRM prescription. There were 100 respondents, including 33 genetic health professionals, 32 medical oncologists and 20 surgeons. Respondents perceived tamoxifen to be effective as a RRM (99%). However, only 41% of prescribing health professionals (n = 64) had ever prescribed tamoxifen as a RRM. Overall, survey respondents felt that the initiation of RRM was the role of specialists. Assessing a patient's risk of breast cancer was reported to be the role of cancer geneticists/familial cancer clinicians (74%) and medical oncologists (66%). Discussion about the use of RRM was reported to be the role of these same groups (84% and 85% respectively). Medical oncologists (83%) and breast physicians (70%) were most frequently considered to be responsible for initiating the prescription and monitoring women once commenced on RRM (72% and 71% respectively). Oncology health professionals express confidence in the effectiveness of tamoxifen as a RRM despite reporting low prescription rates. Findings demonstrate that these oncology health professionals felt that initiation of RRM was the role of cancer specialists, despite preventative medicine being seen as a primary care activity. If uptake among at-risk women increases, this will put a significant burden on cancer services and GPs will need to take on a greater role in the delivery of RRM.

Satisfaction, disappointment and regret surrounding fertility preservation decisions in the paediatric and adolescent cancer population.

PURPOSE: With over 80% of paediatric and adolescent cancer patients surviving into adulthood, quality-of-life issues such as future fertility are increasingly important. However, little is known about regret around decisions to pursue or forgo fertility preservation (FP). We investigated the risk of decision regret in families involved in making a FP decision and explored contributive factors. METHODS: Parents and patients ≥ 15 years were invited to participate. Participants completed a 10-item survey, including a validated Decision Regret Scale. Scores ≥ 30 indicated high regret. Free-text response items allowed participants to provide reasons for satisfaction or regret. RESULTS: A total of 108 parents and 30 patients participated. Most (81.4%) reported low regret (mean score 13.7). On multivariate analysis, predictors of low regret included having a FP procedure and a fertility discussion pre-treatment. Most participants believed that FP offers hope for future fertility. Some reported dissatisfaction with the process of decision-making. CONCLUSION: Overall levels of regret in the study population were low, with factors associated with quality, timely discussion and belief in the success of FP technology being predictors of low regret. However, dissatisfaction with the decision-making process itself revealed that refinements to the programme are required to meet families' needs.

Investigating the care needs of those with endometriosis: Are we listening to the patients?

What do women with endometriosis need? What are the things that would make their lives easier? Where are the gaps in their care? Questions like these can only be answered by women themselves. The development of an unmet needs survey for women with endometriosis would facilitate the design of patient-centred interventions to meet these needs and ultimately improve quality of life.