Supportive Care Needs of Young Adults With Endometriosis: An Open-Ended Online Survey and Exploration of Unmet Needs.

Objective: The aim of this study is to identify and explore the unmet needs of adolescents and young adults living with endometriosis.

Design: An open-ended online survey was conducted, with questions derived from prior research looking at areas of unmet need in healthcare, career and work, financial, information, psychological, social and cultural domains.

Setting And Population: Self-selecting 18-25 year olds with surgically diagnosed endometriosis (self-reported) currently living in Australia were included as participants.

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

Study Question: What is the impact of co-designed, evidence-based information regarding the anti-Mullerian hormone (AMH) test on women's interest in having the test?

Summary Answer: Women who viewed the evidence-based information about the AMH test had lower interest in having an AMH test than women who viewed information produced by an online company selling the test direct-to-consumers.

What Is Known Already: Online information about AMH testing often has unfounded claims about its ability to predict fertility and conception, and evidence suggests that women seek out and are recommended the AMH test as a measure of their fertility potential.

Study Design, Size, Duration: An online randomized trial was conducted from November to December 2022.

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 Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we searched 4 databases for studies exploring perspectives, experiences, and preferences of parents/caregivers and/or patients regarding germline testing of children with cancer.

Addressing sociodemographic, socioeconomic, and gendered disparities for equity in menopause care.

Menopause experiences and care vary widely because of biological, sociodemographic, and sociocultural factors. Treatments for troublesome symptoms are not uniformly available or accessed. Intersectional factors may affect the experience and are poorly understood.

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.

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.

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.

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 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.

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.

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.

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

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.

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.

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.

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.

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

To understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making. 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.

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.

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).

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.

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.

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.