Louise Johnson

Knowledge about factors that influence fertility among Australians of reproductive age: a population-based survey.

OBJECTIVE To explore knowledge about the effects on fertility of age, obesity, smoking, and timing of intercourse among Australians of reproductive age. DESIGN Telephone survey of a representative sample of Australians. SETTING Not applicable. PATIENT(S) Australians aged 18 to 45 years who wish to have a child or another child now or in the future. INTERVENTION(S) None. MAIN OUTCOME MEASURE(S) Knowledge about the effect on fertility of age, obesity, smoking, and timing of intercourse. RESULT(S) A total of 462 interviews were conducted. The majority of respondents underestimated, by about 10 years, the age at which male and female fertility starts to decline. Only one in four correctly identified that female fertility starts to decline before age 35, and one in three identified that male fertility starts to decline before age 45. Most (59%) were aware that female obesity and smoking affect fertility, but fewer recognized that male obesity (30%) and smoking (36%) also influence fertility. Almost 40% of respondents had inadequate knowledge of when in the menstrual cycle a woman is most likely to conceive. CONCLUSION(S) Considerable knowledge gaps about modifiable factors that affect fertility were identified. These are targeted in a national education campaign to promote awareness of factors that influence fertility.

Development of a health promotion programme to improve awareness of factors that affect fertility, and evaluation of its reach in the first 5 years

Awareness among people of reproductive age about the factors that influence fertility and reproductive outcomes, including medically assisted reproduction outcomes, is generally low. To improve awareness about the potentially modifiable factors that affect fertility and reproductive outcomes, ‘Your Fertility’, a fertility health promotion programme funded by the Australian Government, was established in 2011. This paper describes the development and evaluation of the reach of the Your Fertility programme from its inception in 2011 to June 2016. Systematically recorded outcomes for the programme’s key focus areas and Google Analytics data were collated. Key achievements include developing and maintaining an internationally renowned website that experiences high growth and demand for fertility-related information; by 2016, over 5 million users had viewed more than 10 million webpages, and over 96,000 users had engaged in programme messages across social media. Programme messages have reached more than 4 million Australian social media users, and a potential audience of 150 million through media coverage across more than 320 media features. More than 4200 education and health professionals have completed online learning modules, and external partnerships have been established with 14 separate organizations. Data collected over 5 years indicate that the Your Fertility programme meets a need for targeted, evidence-based, accessible fertility-related information.

Recommendations from the international evidence-based guideline for the assessment and management of polycystic ovary syndrome

Study Question: What is the recommended assessment and management of women with polycystic ovary syndrome (PCOS), based on the best available evidence, clinical expertise, and consumer preference? Summary Answer: International evidence-based guidelines including 166 recommendations and practice points, addressed prioritized questions to promote consistent, evidence-based care and improve the experience and health outcomes of women with PCOS. What Is Known Already: Previous guidelines either lacked rigorous evidence-based processes, did not engage consumer and international multidisciplinary perspectives, or were outdated. Diagnosis of PCOS remains controversial and assessment and management are inconsistent. The needs of women with PCOS are not being adequately met and evidence practice gaps persist. Study Design, Size, Duration: International evidence-based guideline development engaged professional societies and consumer organizations with multidisciplinary experts and women with PCOS directly involved at all stages. Appraisal of Guidelines for Research and Evaluation (AGREE) II-compliant processes were followed, with extensive evidence synthesis. The Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) framework was applied across evidence quality, feasibility, acceptability, cost, implementation and ultimately recommendation strength. Participants/Materials, Setting, Methods: Governance included a six continent international advisory and a project board, five guideline development groups, and consumer and translation committees. Extensive health professional and consumer engagement informed guideline scope and priorities. Engaged international society-nominated panels included pediatrics, endocrinology, gynecology, primary care, reproductive endocrinology, obstetrics, psychiatry, psychology, dietetics, exercise physiology, public health and other experts, alongside consumers, project management, evidence synthesis, and translation experts. Thirty-seven societies and organizations covering 71 countries engaged in the process. Twenty face-to-face meetings over 15 months addressed 60 prioritized clinical questions involving 40 systematic and 20 narrative reviews. Evidence-based recommendations were developed and approved via consensus voting within the five guideline panels, modified based on international feedback and peer review, with final recommendations approved across all panels. Main Results and the Role of Chance: The evidence in the assessment and management of PCOS is generally of low to moderate quality. The guideline provides 31 evidence based recommendations, 59 clinical consensus recommendations and 76 clinical practice points all related to assessment and management of PCOS. Key changes in this guideline include: i) considerable refinement of individual diagnostic criteria with a focus on improving accuracy of diagnosis; ii) reducing unnecessary testing; iii) increasing focus on education, lifestyle modification, emotional wellbeing and quality of life; and iv) emphasizing evidence based medical therapy and cheaper and safer fertility management. Limitations, Reasons for Caution: Overall evidence is generally low to moderate quality, requiring significantly greater research in this neglected, yet common condition, especially around refining specific diagnostic features in PCOS. Regional health system variation is acknowledged and a process for guideline and translation resource adaptation is provided. Wider Implications of the Findings: The international guideline for the assessment and management of PCOS provides clinicians with clear advice on best practice based on the best available evidence, expert multidisciplinary input and consumer preferences. Research recommendations have been generated and a comprehensive multifaceted dissemination and translation program supports the guideline with an integrated evaluation program. Study Funding/Competing Interest(S): The guideline was primarily funded by the Australian National Health and Medical Research Council of Australia (NHMRC) supported by a partnership with ESHRE and the American Society for Reproductive Medicine. Guideline development group members did not receive payment. Travel expenses were covered by the sponsoring organizations. Disclosures of conflicts of interest were declared at the outset and updated throughout the guideline process, aligned with NHMRC guideline processes. Full details of conflicts declared across the guideline development groups are available at https://www.monash.edu/medicine/sphpm/mchri/pcos/guideline in the Register of disclosures of interest. Of named authors, Dr Costello has declared shares in Virtus Health and past sponsorship from Merck Serono for conference presentations. Prof. Laven declared grants from Ferring, Euroscreen and personal fees from Ferring, Euroscreen, Danone and Titus Healthcare. Prof. Norman has declared a minor shareholder interest in an IVF unit. The remaining authors have no conflicts of interest to declare. The guideline was peer reviewed by special interest groups across our partner and collaborating societies and consumer organizations, was independently assessed against AGREEII criteria and underwent methodological review. This guideline was approved by all members of the guideline development groups and was submitted for final approval by the NHMRC

Disclosure and donor-conceived children

Sir, Guido Pennings’ views on favouring donor anonymity are well known. However we were very concerned at your decision to publish and then highlight his article Disclosure of donor conception, age of disclosure and the well-being of donor offspring (Pennings, 2017) which, in our view, fell significantly short of the academic rigour we expect of Human Reproduction and its peer review and editorial processes. The signatories to this letter come from the fields of academia, professional practice, parent/family/ donor-conceived support groups and donor registry services. The research evidence concerning the impact of disclosure and age of disclosure on donor-conceived people and their family members is very limited, both in terms of numbers and range of participants, numbers of research teams working in this field and methodologies used, including sampling across all studies. There are to date no large-scale studies. This was not made clear: more than this, Pennings considered that the evidence was in fact sufficient to make claims based on it, not least through disproportionately weighting selected studies and ones which used primarily parental reports (which form the bulk of existing studies) over those from donor-conceived individuals, which he claimed used biased samples. He went on to attribute morality (‘parents should disclose’) rather than knowledge as the reason Kovacs et al. (2015) and the Nuffield Report (2013) recommended disclosing. In doing so, he ignored Nuffield’s emphasis on adolescent psychological development as a key plank of their decision and Kovacs et al.’s attention to the Australian cultural context. With regard to the latter, Pennings instead chose to represent this approach as being so at odds with their findings as to question their motivation as researchers (‘One wonders why they have done the study in the first place’) rather than acknowledge its validity. Unlike Pennings, some of those he singled out for criticism thoughtfully discuss the complexity of measuring outcomes as evidenced by, for example, Freeman and Golombok (2012) when they said: ‘However, differences between disclosing and nondisclosing families cannot be directly attributed to parents’ disclosure decisions and may reflect other differences between these families’. Both for these reasons and because research evidence only forms one part of what informs theory, policy and practice in any field—and perhaps especially where human relationships are concerned—the basic premise of Pennings’ paper is in our view academically flawed. Pennings omitted any reference at all to human rights, despite this being a key influence on change in this field as shown in current legislative moves in Germany, and dismissed personal experiences when captured through the grey literature or professional experience. Finally, and importantly, Pennings ignored the actual and potential impact of recent rises in DNA testing, including direct-to-consumer DNA testing, on the ability to maintain secrecy about involvement in donor conception given the resulting increased likelihood of unplanned disclosure and its associated risks (risks which Pennings chose largely to ignore). This despite a paper by Harper et al. (2016) ‘The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business being an earlier Human Reproduction ‘Editor’s Highlight’ in 2016. Pennings went on to make critical remarks about counsellors and psychologists, ironically without citing any evidence to substantiate his claims and in the process minimizing multi-disciplinary support for openness as evidenced though such professional bodies’ guidelines as the American Society of Reproductive Medicine, the British Fertility Society, and the Australian and New Zealand Infertility Counsellors Association (ANZICA). His suggestion that counsellors and psychologists should be training parents who do not wish to disclose to ‘build a coherent and easy to maintain story’ is especially troubling; it is one thing to be expected to respect parents’ decisions (which psychosocial professionals do, in our experience), it is entirely another to expect them to teach parents how to lie to their children. Of course academics have the right to prompt debate and discussion on such important topics as disclosure and anonymity and we strongly respect that right; our concern here is that this paper has not met the standards that we would have expected from Human Reproduction.

Fertility facts, figures and future plans: an online survey of university students

Abstract Most people want and expect to have children but lack of awareness about the biological limits of fertility may reduce their chance of achieving their parenthood goals. We surveyed Australian university students’ intentions and expectations for future parenthood, knowledge about fertility and preferred sources of fertility information. Male and female students (n = 1215) completed an anonymous 34-item online questionnaire. Fewer than 10% did not want children. Of those who wanted children, most (75%) wanted two or more. Although most participants wanted to have children within the biological limits of fertility they also expected to achieve many other life goals before becoming parents. Most underestimated the impact of female and male age on fertility (>75% and >95%, respectively). General practitioners and the Internet were the most preferred sources of fertility information. Almost all stated they would not feel uncomfortable if their general practitioner brought up the topic of future reproductive plans. To help women and men achieve their parenthood goals better education about fertility protection; proactive discussions with young people in primary care settings about reproductive life planning; and social policies and health promotion strategies that support becoming parents during the most fertile years are needed.

Quality of information about success rates provided on assisted reproductive technology clinic websites in Australia and New Zealand

Many factors influence the chance of having a baby with assisted reproductive technologies (ART). A 2016 Australian Competition and Consumer Commission (ACCC) investigation concluded that ART clinics needed to improve the quality of information they provide about chance of ART success.