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rigorous evidence-based processes, did not engage consumer and international multidisciplinary perspectives, or were outdated.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

Adult learners’ perspectives on their engagement in a hybrid learning postgraduate programme

Student engagement is a prerequisite for successful learning. Due to the tremendous change in the use of information and communication technologies, the nature of this engagement has had to adapt to fit a hybrid approach of teaching and learning. In this qualitative study, three focus group discussions were conducted that aimed to investigate adult learners’ perspectives on their engagement in a hybrid learning postgraduate programme. Deductive content analysis was done of the transcribed data using Pittaway’s Engagement Framework. Main findings were that adult learners’ computer literacy skills impacted on their own self-efficacy towards their ability to study and use technology. Lecturers’ social engagement, especially their support to students, was also highlighted. Other factors, such as Internet access and power failures, hampered adult learners’ access to online activities. An adapted engagement framework for adult learners is proposed and should be taken into account when developing new online programmes for adult learners.The Department of Higher Education and Training Teaching Grant for Scholarship of Teaching and Learning.http://www.tandfonline.com/loi/ujch20hj2018Centre for Augmentative and Alternative Communication (CAAC)Education Innovatio

The sustainable development goals : a framework for addressing participation of persons with complex communication needs in South Africa

BACKGROUND : Participation in society is the cornerstone to living a meaningful, connected, and healthy life. Persons with complex communication needs, however, often have restricted opportunities to participate in everyday contexts and situations. Reasons for this include societal attitudinal barriers, as well as limited knowledge and skills about augmentative and alternative communication (AAC) to enhance participation. Enhancing participation of persons with complex communication needs requires a holistic and multi-faceted approach. The 17 Sustainable Development Goals (SDGs) with their disability-inclusive agenda provide an impetus for shaping the approach of the Centre for Augmentative and Alternative Communication (CAAC) in enhancing participation of persons with complex communication needs in South Africa. PURPOSE : This paper aims to provide a reflective description and application of the work conducted by the CAAC in addressing the SDGs in South Africa. RESULTS : Research and training conducted by the CAAC is shown to be aligned to five SDGs, namely zero hunger (SDG 2), good health and well-being (SDG 3), quality education (SDG 4), decent work and economic growth (SDG 8) and peace, justice, and strong institutions (SDG 16), with a focus on reaching these goals in order to benefit persons with complex communication needs. CONCLUSION : The paper demonstrates that, despite some gains in addressing the SDGs, research and clinical practice still needs to be on these and the remaining SDGs. Furthermore, there is a need to also find ways to integrate the SDGs to ensure participation of persons with complex communication needs in major life activities and society.https://www.tandfonline.com/loi/iasl202023-11-10hj2023Centre for Augmentative and Alternative Communication (CAAC

Understanding the evolving phenotype of vascular complications in telomere biology disorders

On behalf of the Clinical Care Consortium for Telomere-associated Ailments (CCCTAA).Vascular complications such as bleeding due to gastrointestinal telangiectatic anomalies, pulmonary arteriovenous malformations, hepatopulmonary syndrome, and retinal vessel abnormalities are being reported in patients with telomere biology disorders (TBDs) more frequently than previously described. The international clinical care consortium of telomere-associated ailments and family support group Dyskeratosis Congenita Outreach, Inc. held a workshop on vascular abnormalities in the TBDs at the National Cancer Institute in October 2017. Clinicians and basic scientists reviewed current data on vascular complications, hypotheses for the underlying biology and developed new collaborations to address the etiology and clinical management of vascular complications in TBDs.Peer reviewe