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.

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).

Recommended measurement instruments for genitourinary symptoms associated with menopause: the COMMA (Core outcomes in menopause) consortium.

OBJECTIVE: The aim of the study is to identify appropriate definitions and patient-reported outcome measures (PROMs) for each of the eight core outcomes previously selected for genitourinary symptoms associated with menopause: pain with sex, vulvovaginal dryness, vulvovaginal discomfort or irritation, discomfort or pain when urinating, change in most bothersome symptom, distress, bother or interference of genitourinary symptoms, satisfaction with treatment, and side effects. METHODS: We conducted a systematic review to identify possible definitions and PROMs, including their measurement properties. Identified definitions and relevant PROMs with acceptable measurement properties were entered into an international consensus process involving 28 participants from 10 countries to achieve final recommendations for each core outcome. RESULTS: A total of 87 publications reporting on 34 PROMs were identified from 21,207 publications screened. Of these 34 PROMs, 29 were not considered to sufficiently map onto the core outcomes, and 26 of these also had insufficient measurement properties. Therefore, only five PROMs corresponding to two core outcomes were considered for recommendation. We recommend the PROMIS Scale v2.0 - Sexual Function and Satisfaction: Vaginal Discomfort with Sexual Activity to measure the outcome of "pain with sexual activity" and the Day-to-Day Impact of Vaginal Aging (DIVA) Questionnaire to measure "distress, bother or interference" from genitourinary symptoms. Six definitions of "side effects" were identified and considered. We recommend that all trials report adverse events in study participants, which is a requirement of Good Clinical Practice. CONCLUSIONS: Suitable PROMs and definitions were identified to measure three of eight core outcomes. Because of the lack of existing measures, which align with the core outcomes and have evidence of high-quality measurement properties, future work will focus on developing or validating PROMs for the remaining five core outcomes.

Heavy menstrual bleeding and dysmenorrhea in adolescents: A systematic review of self-management strategies, quality of life, and unmet needs.

BACKGROUND: Heavy menstrual bleeding (HMB) and dysmenorrhea (DM) are common gynecological problems. OBJECTIVE: To systematically review the needs, quality of life (QOL), and effectiveness of self-management strategies among young women (12-25 years) with DM or HMB. SEARCH STRATEGY: Relevant terms were searched through PubMed, EBSCO, Google Scholar, ProQuest, and Ovid between 2010 and 2022. SELECTION CRITERIA: Qualitative and quantitative studies published in peer-reviewed journals, females aged 12-25, exploring DM or HMB, reporting supportive care needs, quality of life, self-treatment strategies, and/or treatment-seeking behavior. DATA COLLECTION AND ANALYSIS: Abstracts were reviewed for eligibility by two researchers. Included studies were extracted and assessed for quality independently by two authors, with discrepancies resolved through consensus or the involvement of a third researcher. Data extracted included study details, menstrual history, symptoms, self-care strategies, and quality of life. The Joanna Briggs Institute checklists were used for quality assessment. MAIN RESULTS: The search returned 285 190 studies, of which 55 were eligible for inclusion. Prevalence rates of HMB and DM were in the ranges 4%-63% and 42%-94%, respectively. Over 80% of young women with DM and HMB experienced physical and psychological problems, including pelvic pain, sleep issues, mood disturbance, diarrhea, and nausea. Academic performance and daily activities were severely affected. Most (>62%) named their mothers as their primary source of information, and friends as the secondary source (10%-65%). Few studies explored needs, but they could be inferred and fell under school-related and social needs. QOL was poorer in those who had DM than those who did not. Pain was the most common issue that drove young women to find treatment. More than 70% used medication to reduce pain. More than half chose home remedies (e.g., heat therapy, massages, herbal tea, hot drinks). No studies provided information about the efficacy and dosage of medication and herbal remedies. CONCLUSIONS: HMB and DM have a large impact on daily living, with large areas of unmet need. Limited access to information impairs the management of symptoms and consequent QOL.

Recommended measurement instruments for menopausal vasomotor symptoms: the COMMA (Core Outcomes in Menopause) consortium.

OBJECTIVE: The aim of the study is to identify suitable definitions and patient-reported outcome measures (PROMs) to assess each of the six core outcomes previously identified through the COMMA (Core Outcomes in Menopause) global consensus process relating to vasomotor symptoms: frequency, severity, distress/bother/interference, impact on sleep, satisfaction with treatment, and side effects. METHODS: A systematic review was conducted to identify relevant definitions for the outcome of side-effects and PROMs with acceptable measurement properties for the remaining five core outcomes. The consensus process, involving 36 participants from 16 countries, was conducted to review definitions and PROMs and make final recommendations for the measurement of each core outcome. RESULTS: A total of 21,207 publications were screened from which 119 reporting on 40 PROMs were identified. Of these 40 PROMs, 36 either did not adequately map onto the core outcomes or lacked sufficient measurement properties. Therefore, only four PROMs corresponding to two of the six core outcomes were considered for recommendation. We recommend the Hot Flash Related Daily Interference Scale to measure the domain of distress, bother, or interference of vasomotor symptoms and to capture impact on sleep (one item in the Hot Flash Related Daily Interference Scale captures interference with sleep). Six definitions of "side effects" were identified and considered. We recommend that all trials report adverse events, which is a requirement of Good Clinical Practice. CONCLUSIONS: We identified suitable definitions and PROMs for only three of the six core outcomes. No suitable PROMs were found for the remaining three outcomes (frequency and severity of vasomotor symptoms and satisfaction with treatment). Future studies should develop and validate PROMs for these outcomes.

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.

Interventions to improve oncofertility knowledge and decision-making in patients with low health literacy: A systematic review.

OBJECTIVE: To conduct a systematic review of interventions that improve knowledge, health and decision-related outcomes in cancer, fertility or the intersection of both among low health literacy (LHL) patients. METHODS: Articles published from 2000 to March 2022 in English were identified through searching MEDLINE, PsycInfo, and Embase databases on 29/03/2022. Studies were independently screened against eligibility criteria and appraised for quality. A narrative synthesis of data was presented. RESULTS: Of 235 citations, 11 studies (2585 participants) investigating three categories were included: decision-support tools (n = 8), mobile health applications (n = 2) and communication tools (n = 1). No eligible study was identified for fertility or oncofertility. All interventions integrated multimedia or interactivity to supplement plain-language text. Decision aids and mobile health applications improved knowledge, reduced decisional conflict and increased clarity around cancer-related choices. Overall, findings favoured the use of online interventions tailored for LHL patients. CONCLUSION: There is a lack of data on LHL interventions in fertility and oncofertility. In cancer, LHL interventions improved knowledge and decision-making outcomes. The ideal intervention remains inconclusive. PRACTICE IMPLICATIONS: Lack of engagement with LHL needs in oncofertility and fertility settings have implications for informed treatment decision-making. In cancer, further research is required to ascertain most effective intervention format.

Experiences of Family and Partner Support in Fertility Decision-Making Among Adolescents and Young Adults with Cancer: A National Australian Study.

Purpose: To understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making. Methods: As part of a nationally representative Australian cross-sectional study of 15-25-year olds with cancer, 196 participants (mean age 19.9 [standard deviation 3.2] years at diagnosis; 51% male) were surveyed regarding FP decision-making. Results: One hundred sixty-one (83%) participants reported discussion of potential effects of cancer and its treatment on fertility, of whom 57 (35%) did not undertake FP (51% of females; 19% of males). Parental involvement (mothers 62%, fathers 45%) in decision-making was considered helpful, including for 73% of 20-25-year olds with partners. Sisters and brothers were involved less often, yet rated helpful in 48% and 41% of cases, respectively. Older participants were more likely than younger ones to have involved partners (47% vs. 22%, p = 0.001) and less likely to have involved mothers (56% vs. 71%, p = 0.04) or fathers (39% vs. 55%, p = 0.04). Conclusion: This is the first quantitative study to explore family and partner involvement in AYA FP decision-making in both females and males in a nationally representative sample. Parents are important resources who commonly assist AYAs with these complex decisions. Although many AYAs will be the main decision-makers when it comes to FP, particularly as AYAs mature, these data suggest that resources and support should be available for and inclusive of parents, partners, and siblings.

Experiences of Oncofertility Decision-Making and Care in a National Sample of Adolescent and Young Adult Cancer Patients and Parents.

Purpose: Cancer and its treatments are known to compromise fertility in adolescents and young adults (AYAs). The emotional burden of possible infertility is reduced in those who receive supportive oncofertility care. In legal minors, provision of health care must consider the legal context and desire that AYAs have for autonomous decision-making, together with their competence to make health decisions. This has important implications for how oncofertility discussions may, or may not, involve parents. The aim of this study was to explore oncofertility decision-making and care experiences in a national Australian sample of AYA cancer patients and their parents. Methods: AYAs aged 15-25 years and parents were recruited from 17 cancer care sites and CanTeen Australia as part of a national AYA cancer care study. The cross-sectional survey included open-ended questions regarding oncofertility care experiences. We used reflexive thematic analysis to identify themes. Results: Data were available for 99 AYAs and 111 parents. Four themes were identified: emotional care needs; parent-AYA dynamics including AYA autonomy and agency; decision-making considerations including values and practicalities; and reflections on oncofertility care and follow-up. Both AYAs and parents placed importance on AYA autonomy in fertility decision-making, but many AYAs appreciated the role of parents in providing support and guidance throughout the process. Conclusion: Health care professionals are encouraged to autonomously engage AYAs around fertility decision-making, while concurrently offering opportunities that promote parental support. Better psychological support and follow-up oncofertility care are also needed.

Ovarian stimulation and oocyte cryopreservation in females and transgender males aged 18 years or less: a systematic review.

Background: Fertility preservation is an important healthcare focus in the paediatric and adolescent population when gonadotoxic treatments are required. Ovarian stimulation (OS) resulting in oocyte cryopreservation is a well-established fertility preservation option in the adult population. It's utility, however, is little known in young patients. The purpose of this review was to synthesise the available literature on OS in patients ≤18 years old, to identify gaps in current research and provide suggestions for future research directions. Methods: Using PRISMA guidelines, a systematic review of the literature was performed for all relevant full-text articles published in English in Medline, Embase, the Cochrane Library and Google Scholar databases. The search strategy used a combination of subject headings and generic terms related to the study topic and population. Two reviewers independently screened studies for eligibility, extracted data and assessed the risk of bias. Characteristics of the studies, objectives and key findings were extracted and summarised in a narrative synthesis. Results: Database search and manual review identified 922 studies, 899 were eliminated based on defined exclusion criteria. Twenty-three studies were included and comprised 468 participants aged ≤18 years who underwent OS (median 15.2, range 7-18 years old). Only three patients were premenarchal, and four patients were on treatment to suppress puberty. Patients had OS for a broad range of indications including oncology treatment, transgender care and Turner syndrome. A total of 488 cycles of OS were completed, with all but 18 of these cycles (96.3%) successfully resulting in cryopreserved mature oocytes (median 10 oocytes, range 0-35). Fifty-three cycles (9.8%) were cancelled. Complications were rare (<1%). One pregnancy was reported from a female who had OS aged 17 years old. Conclusion: This systematic review demonstrates that OS and oocyte cryopreservation is achievable in young females however there are only a few cases in the literature describing OS in premenarcheal children or those who have suppressed puberty. There is little proof that OS can lead to pregnancy in adolescents, and no proof that this can be achieved in premenarchal girls. Therefore it should be regarded as an innovative procedure for adolescents and experimental for premenarcheal girls. Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=265705, identifier CRD42021265705.

Patient and professional perspectives about using in vitro fertilisation add-ons in the UK and Australia: a qualitative study.

OBJECTIVES: In vitro fertilisation (IVF) add-ons are additional procedures offered alongside an IVF cycle with the aim of improving live birth rates. They are controversial because of the paucity of evidence to support their efficacy and safety, alongside the additional financial cost they often pose to patients. Despite this, they are popular. However, there is limited qualitative research regarding their use. The aims of the VALUE Study were to understand the decision-making process surrounding using or recommending add-ons; report sources of information for add-ons; and explore concerns for safety and effectiveness when considering their use. DESIGN: 'VALUE' is a qualitative semistructured interview study using inductive thematic analysis of anonymised transcriptions. SETTING: Participants were recruited from a broad geographical spread across the UK and Australia from public and private clinical settings. PARTICIPANTS: Patients (n=25) and health professionals (embryologists (n=25) and clinicians (n=24)) were interviewed. A purposive sampling strategy was undertaken. The sampling framework included people having state-subsidised and private cycles, professionals working in public and private sectors, geographical location and professionals of all grades. RESULTS: Patients often made decisions about add-ons based on hope, minimising considerations of safety, efficacy or cost, whereas professionals sought the best outcomes for their patients and wanted to avoid them wasting their money. The driving forces behind add-on use differed: for patients, a professional opinion was the most influential reason, whereas for professionals, it was seen as patient driven. For both groups, applying the available evidence to individual circumstances was very challenging, especially in the sphere of IVF medicine, where the stakes are high. CONCLUSIONS: There is scope to build on the quality of the discourse between patients and professionals. Patients describe valuing their autonomy with add-ons, but for professionals, undertaking informed consent will be critical, no matter where they sit on the spectrum regarding add-ons. TRIAL REGISTRATION: osf.io/vnyb9.

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).

"It all depends on why it's red": qualitative interviews exploring patient and professional views of a traffic light system for IVF add-ons.

Background IVF add-ons are techniques, medicines or procedures used in addition to standard IVF with the aim of improving the chance of success. The United Kingdom's IVF regulator, ( the Human Fertilisation Embryology Authority (HFEA) developed a traffic light system to categorise add-ons as either green, amber, or red, based on results of randomised controlled trials. Method Qualitative interviews were undertaken to explore understanding and views of the HFEA traffic light system among IVF clinicians, embryologists and IVF patients across Australia and the United Kingdom. Results A total of 73 interviews were conducted. Overall, participants were supportive of the intention of the traffic light system, however many limitations were raised. It was widely recognized that a simple traffic light system necessarily omits information which may be important to understanding the evidence base. In particular, the red category was used in scenarios that patients viewed as having different implications for their decision-making, including 'no evidence' and 'evidence of harm'. Patients were surprised at the absence of any green add-ons and questioned the value of a traffic light system in this context. Many participants considered the website a helpful starting point, but desired more detail, including the contributing studies, results specific to patient demographics (e.g., <35 years and >35 years), and inclusion of more options (e.g. acupuncture). Overall, participants believed the website to be reliable and trustworthy, particularly due to the Government affiliation, and despite some concerns regarding transparency and an overly cautious regulator. Conclusion Participants identified many limitations with the current application of the traffic light system. These could be considered in any future updates to the HFEA website and for others developing similar decision support tools.

Systematic protocol and methodology needed for pre-procedure counselling of elective egg freezing patients in Singapore.

Upon legalization of social egg freezing in Singapore from 2023 onwards, compulsory pre-procedure counselling is mandated for all prospective patients to enable informed choice about whether to undergo the procedure. Being a newly introduced medical procedure in Singapore, there are currently no clear directives on what pre-procedure counselling for elective egg freezing should entail. Due to pervasive media and internet influences, prospective egg freezing patients could be misled into believing that the procedure represents a guaranteed path to future motherhood, contrary to statements by professional bodies such as the American Society for Reproductive Medicine (ASRM) and the British Fertility Society (BFS). Hence, comprehensive counselling is recommended to provide women with evidence-based information (e.g. success rates of social egg freezing for women of their age) to ensure they make informed decisions and to avoid possible decision regret. For this purpose, a systematic protocol and methodology for pre-procedure counselling of women considering elective egg freezing was developed, incorporating flowcharts and decision trees that are specifically tailored to the unique sociocultural values and legal restrictions in Singapore. Questions relating to the why, what, how, where and when of the egg freezing procedure should be addressed, which could serve as a roadmap to facilitate informed decision-making by women considering elective egg freezing.

Elective egg freezers' disposition decisions: a qualitative study.

OBJECTIVE: To explore the factors that influence elective egg freezers' disposition decisions toward their surplus-frozen oocytes. DESIGN: Qualitative. SETTING: Not applicable. PATIENT(S): Thirty-one participants: 7 past; 6 current; and 18 future oocyte disposition decision-makers. INTERVENTION(S): Not applicable. MAIN OUTCOME MEASURE(S): Qualitative thematic analysis of interview transcripts. RESULTS: Six inter-related themes were identified related to the decision-making process which are as follows: decisions are dynamic; triggers for the final decision; achieving motherhood; conceptualization of oocytes; the impacts of egg donation on others; and external factors affecting the final disposition outcome. All women reported a type of trigger event for making a final decision (e.g., completing their family). Women who achieved motherhood were more open to donating their oocytes to others but were concerned about the implications for their child and felt responsibility for potential donor children. Women who did not achieve motherhood were unlikely to donate to others due to the grief of not becoming a mother, often feeling alone, misunderstood, and unsupported. Reclaiming oocytes (e.g., taking them home) and closure ceremonies helped some women process their grief. Donating to research was viewed as an altruistic option as oocytes would not be wasted and did not have the "complication" of a genetically-linked child. There was a general lack of knowledge around disposition options at all stages of the process. CONCLUSION(S): Oocyte disposition decisions are dynamic and complex for women, exacerbated by a general lack of understanding of these options. The final decision is framed by: whether women achieved motherhood, dealing with grief if they did not achieve motherhood, and considering the complexities of donating to others. Additional decision support through counseling, decision aids, and early consideration of disposition when eggs are initially stored may help women make informed decisions.

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.

Priorities for alleviating menopausal symptoms after cancer.

OBJECTIVE: To determine treatment priorities in women cancer patients attending a dedicated Menopausal Symptoms After Cancer service. METHODS: Cancer type and stage were abstracted from medical records. Women ranked up to three symptoms as treatment priorities from the list "hot flushes/night sweats," "mood changes," "vaginal dryness or soreness," "sleep disturbances," "feeling tired or worn out (fatigue)," "sexual problems and/or pain with intercourse," "joint pain," and "something else" with free-text response. For each prioritized symptom, patients completed standardized patient-reported outcome measures to determine symptom severity and impact. RESULTS: Of 189 patients, most had breast cancer (48.7%, n = 92), followed by hematological (25.8%, n = 49), gynecological (18.0%, n = 34), or colorectal (2.6%, n = 5). The highest (first-ranked) treatment priority was vasomotor symptoms (33.9%, n = 64), followed by fatigue (18.0%, n = 34), vaginal dryness/soreness (9.5%, n = 18), and sexual problems/pain with intercourse (9.5%, n = 18). Symptoms most often selected in the top three ("prioritized") were fatigue (57.7%, n = 109), vasomotor symptoms (57.1%, n = 108), and sleep disturbance (49.2%, n = 93). In patients who prioritized vasomotor symptoms, medians on the "problem," "distress," and "interference" dimensions of the Hot Flash Related Daily Interference Scale were, respectively, 6.0 (interquartile range [IQR], 5.0-8.0), 5.5 (IQR, 3.0-8.0), and 5.0 (IQR, 3.-7.0), indicating moderate severity. In patients who prioritized fatigue, the median Fatigue Scale score was 28 (IQR, 19-36), 37% worse than general population. CONCLUSIONS: Vasomotor symptoms, fatigue, sexual problems, and vaginal dryness/soreness were the leading priorities for treatment. Understanding symptom severity and patient priorities will inform better care for this growing population.

Unmet Needs in Endometriosis: Lessons from COVID-19.

Background: One key challenge of the COVID-19 pandemic is health care access. Government-imposed restrictions and increased health care burden have induced considerable changes to health care services and their delivery. These are likely to have substantially impacted those with chronic conditions such as endometriosis, as they require sustained management. Aims: Our objective was to explore the impact of the COVID-19 pandemic on the experience of people with endometriosis, and to use this information to inform health care delivery for the management of chronic conditions in a COVID-normal future. Materials and Methods: Invitation to participate in an open-ended online survey through social media of Australian endometriosis organizations and the Royal Women's Hospital, Melbourne. Surveys were analyzed qualitatively through template analysis. Results: Of 576 surveys returned, 329 reported COVID-19 having an impact. Fifteen areas of impact were identified and grouped under three domains: impact on access to health care services, impact on daily life, and impact of isolation. Common impacts included reduced access to health care services, improved symptom management due to decreased day-to-day travel and work-from-home arrangements, and both positive and negative views of telehealth services. Conclusions: This study provides in-depth insight into the experiences of people with endometriosis during the COVID-19 pandemic, confirming previous studies' findings and offering insight into discrepancies between the Australian Healthcare system categorization of surgeries as "non-essential," and patient views of these procedures as "essential" to their well-being. Results may inform future adjustments to health care services and delivery to improve the lives of people with endometriosis, and by extension, other chronic conditions.