Abstract
Polycystic ovary syndrome (PCOS) affects 8–13% of reproductive-aged women, impacts biopsychosocial factors and creates a significant health-related economic burden across the reproductive, metabolic and psychological spectrum of complications. Despite being a heterogenous condition, recent genomic studies indicate that PCOS, regardless of diagnostic criteria and clinical features, shares similar underlying biologic mechanisms. However, recent advances have shown that clinical reproductive and diagnostic features are poorly correlated to genotypes and do not represent true phenotypes. Until we have a better understanding of genetic and epigenetic influences on PCOS and long-term outcomes, targeted treatment is limited.
In the interim, a unified approach to integrate evidence, optimise management and guide future research in PCOS is necessary. This has motivated an international collaboration to develop an International Evidence-Based PCOS Guideline to improve health outcomes in women with PCOS. Dissemination and translation of the guideline into health policy and clinical practice are crucial steps to close the knowledge–-practice gap, guide future research and enhance positive impact on the health of women with PCOS.
Here, we review the (i) understanding of aetiology and genetics of PCOS; (ii) development and translation efforts of the 2018 International Evidence-based PCOS Guideline; (iii) current progress and plans for the guideline update, including the involvement of an early career researcher network to assist with evidence synthesis and (iv) the opportunity to target and guide future research for PCOS.
Introduction
Polycystic ovary syndrome (PCOS) is a chronic complex multisystem disorder that affects 8–13% of reproductive-aged women and 3–11% of adolescent girls depending on the population studied and the diagnostic criteria applied (Bozdag et al. 2016, Naz et al. 2019). Diagnostic criteria have been controversial with the European Society for Human Reproduction and Embryology/American Society for Reproductive Medicine (ESHRE/ASRM) consensus Rotterdam criteria (Zawadski & Dunaif 1992, Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group 2004, Azziz et al. 2009) now endorsed internationally. In adults, it is based on the presence of two of three features: oligo/amenorrhoea (OA), clinical/biochemical hyperandrogenism (HA) and polycystic ovary morphology (PCOM) on ultrasound following exclusion of secondary causes (Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group 2004). The Rotterdam criteria were updated and refined in the 2018 International PCOS guideline to omit PCOM investigation in adolescents and base the diagnosis on both OA and HA (Teede 2018, Tay et al. 2020b ).
PCOS is a heterogeneous condition with varying clinical manifestations and health impacts across the lifespan. Early manifestations arise in childhood and health impacts evolve across adolescent years and adult life (Teede et al. 2010). PCOS has significant metabolic (obesity, metabolic syndrome, impaired glucose tolerance, type 2 diabetes, cardiovascular risk factors), reproductive (anovulation, subfertility, pregnancy complications), dermatological (acne, hirsutism, alopecia) and psychological (depression, anxiety, eating disorders, impaired quality of life) sequelae (Lim et al. 2012, 2019, Joham et al. 2015, Dokras et al. 2018, Kakoly et al. 2018, Tay et al. 2019, 2020a ).
While understanding that HA and insulin resistance are the key pathophysiological drivers of PCOS, the underlying aetiology, primarily the genetics’ and epigenetics’ contribution to various disease pathways, remains largely unclear (Dapas & Dunaif 2022). The lack of insight into the distinct PCOS aetiology has hindered the progress of targeted treatment development for women with PCOS. Heterogeneity, varying clinical presentations and evolving manifestations across the lifespan are all challenges. Clinical practice differs across countries and medical specialities due to a lack of medical training and cohesive clinical guidelines leading to unsatisfactory healthcare and poor health outcomes in women with PCOS (Gibson-Helm et al. 2018, Chemerinski et al. 2020). There is a compelling need to extensively review evidence from available literature and to uncover key gaps in knowledge, in order to pave the way forward for more focused and clinically meaningful research in PCOS.
The aim of this review is to describe recent insights into PCOS disease pathways from genomic studies and to outline the rigourous guideline development process, dissemination of the guideline and development of key priority areas for future research to help optimise the health of women with PCOS.
Genomic studies of PCOS
Familial clustering provides initial evidence that there are underlying genetic origins of PCOS. However, like many other chronic diseases such as type 2 diabetes mellitus, the genetic cause of PCOS is likely polygenic due to the cumulative effect of many genetic variants without a clear pattern of inheritance (Lunde et al. 1989, Dapas & Dunaif 2022). The influence of extrinsic environmental contribution on epigenetic modifications of the intrinsic genetic variants is also not yet fully elucidated which further complicates our understanding of the genetic inheritance of PCOS.
In the last decade, research in genetics has increased exponentially with the availability of next-generation sequencing and genome-wide association studies (GWAS). Through GWAS, a total of 19 loci were associated with PCOS risk and they are largely identical in both Han Chinese and European cohorts (Chen et al. 2011, Shi et al. 2012, Day et al. 2015, Hayes et al. 2015, Day et al. 2018, Zhang et al. 2020). Notably, the discovery of candidate genes relating to gonadotrophin secretion and action (FSHB, LHCGR, FSHR), androgen biosynthesis (DENND1A), metabolic regulation (THADA, INSR, HMGA2), follicle development (HMGA2, YAP1) and age of menopause (FSHB, RAD50) has provided important insights to the pathophysiology of PCOS (Dapas & Dunaif 2022). More importantly, these genomic studies suggest that self-reported PCOS and medically well-defined PCOS by either the NIH or the Rotterdam criteria share similar underlying genetic architecture, implicating that PCOS regardless of their diagnostic criteria and phenotypes share common biological underpinnings (Figure 1). Taking together the understanding of recent advances in PCOS genetics, Dapas et al. proposed an updated model of PCOS pathogenesis, ‘Because the characteristic hormonal disruptions in PCOS self-propagate in a feedback loop along the hypothalamic-pituitary-gonadal axis, the underlying causes of this syndrome can vary in their tissues and pathways of origin and nonetheless result in the same PCOS phenotype’ (Dapas & Dunaif 2022).
Genomic insights into PCOS. From Dapas and Dunaif (2022) Copyright 2022 by Oxford University Press. Reprinted with permission.
Citation: Journal of Endocrinology 257, 3; 10.1530/JOE-22-0232
In summary, while it is widely acknowledged that PCOS has heterogenous clinical manifestations, the common genetic associations among phenotypes suggest similar underlying biologic mechanisms. Until more understanding of genetic and epigenetic influences on PCOS and their long-term health outcomes to enable precision medicine for women with PCOS is possible, it is of the utmost importance to develop a standardised evidence-based approach to diagnose and care for women with PCOS to improve health equity and outcomes for this common yet misunderstood and neglected condition.
A shared vision to improve PCOS management and guide vital research – development of an International PCOS Guideline
Our research had demonstrated major gaps in patient and healthcare provider knowledge, inconsistency in care (Supplementary Fig. 1, see section on supplementary materials given at the end of this article) (Gibson-Helm et al. 2014, 2017, 2018) and wide variation in existing PCOS guideline recommendations without an internationally endorsed high-quality guideline (Al Wattar et al. 2021). To bridge this gap, we brought together experts and women with PCOS to develop an international collaborative network. We codeveloped a shared vision – to streamline PCOS research, develop an International PCOS Guideline and translate evidence into clinical practice.
We undertook surveys involving over 3500 women with PCOS as well as health professionals to identify clinical priorities to inform the guideline needs (Gibson-Helm et al. 2017, 2018). We then engaged internationally to establish a governance committee and international advisory board including world-leading academics. Thirty-eight speciality societies and PCOS advocacy support groups worldwide were approached to be both as collaborators (with some co-funding) or as partners with in-kind support. The guideline process itself involved inviting these societies to nominate experts with a clear track record in PCOS research and/or care for women with PCOS. Overall, experts from all relevant disciplines (including endocrinologists, obstetrician-gynaecologists, reproductive endocrinologists, general practitioners, psychologists, dietitians, exercise physiologists etc.) and consumers from 71 countries across 6 continents were engaged (Teede 2018).
The guideline methods aligned with international best practices by implementing the Appraisal of Guidelines for Research & Evaluation II (AGREE II) instrument (Brouwers et al. 2010). Guideline processes included specifying research priorities based on the priority, questions, developed by consumers and health professionals internationally. Through the extensive evidence synthesis following the Grades of Recommendation, Assessment, Development and Evaluation (GRADE) approach (Brozek et al. 2009) and through the deliberations of the guideline review panels, 177 recommendations and practice points were built on 40 systematic reviews in identified priority areas (Teede 2018). Peer review occurred alongside public consultation with all partner societies involved including consumer groups. Extensive feedback was responded to and adapted guidelines were submitted to the Australian government NHMRC for approval of evidence-based guidelines. The guideline was rated independently using the AGREE II instrument and received a score of 6–7, with the highest possible score of 7. The 2018 International PCOS Guideline was endorsed by all partner organisations and resulted in over 110 conference presentations and 89 publications. A recent independent study appraised the quality of all existing PCOS guidelines and noted the high quality and strong consumer involvement of the 2018 International PCOS Guideline (Al Wattar et al. 2021).
Application of Monash Centre for Health Research and Implementation Framework to translate the 2018 International PCOS guideline
The length of time from evidence creation to evidence-based practice remains astonishingly long. Anywhere from 17 years to not at all, with around 85% of research lost to the research-practice gap (Balas & Boren 2000). We posit that this is largely due to a failure to implement evidence-based translation practice. Translating research evidence to clinical practice is essential to safe, transparent, effective and efficient healthcare provision and meeting the expectations of patients, families and society (Curtis et al. 2017). It has been estimated that up to 40% of adult patients receive care that is not based on current evidence or guidelines, including ineffective, unnecessary or potentially harmful treatments (Sackett 2000). The failure of effective and timely research translation results in a lack of benefit to end-users of advances in healthcare, increased risk of iatrogenic harm and the opportunity costs to the health system of continued delivery of obsolete, ineffective or harmful care (Grimshaw et al. 2012). Here, we foreground the Monash Centre for Health Research and Implementation (MCHRI) knowledge translation framework that is notable for a focus on methodological rigour, stakeholder engagement and partnership, leading to the co-production, timely and effective translation (Robinson et al. 2018). While we showcase the MCRHI framework, we emphasise that frameworks that are underpinned by implementation science, including hybrid frameworks, models and theories for implementation.
Stakeholder engagement is critical to effective research translation because they are ideally placed to provide insights into context, impact and relevance. Without the benefit of these insights, the prospect of achieving effective, timely and sustained translation, is greatly diminished. Commonly stakeholder engagement is conducted in a cursory manner or introduced at segments of a translation process such as at the end of an evidence-creation process. The MCRHI framework places stakeholder engagement as critical across the entire research eco-system, from problem definition, framing of research questions, co-design of methodologies, knowledge mobilisation, co-production of research translation outputs and dissemination. To illustrate an evidence-informed research translation process, we provide a case study of the 2018 International PCOS Guideline on the assessment and management of PCOS (Robinson et al. 2018, Teede 2018).
Overview of research translation of the 2018 International PCOS Guideline
A comprehensive, international research translation programme was embedded in the 2018 International PCOS Guideline. Partners and collaborators contributed members to the translation committees who leveraged their extensive reach and influence to promote guideline uptake. Research translation was integrated across all research phases with the international guideline network with the translation resources co-designed with, and attuned to, the needs of end-users. Dissemination strategies were multifaceted, multimodal and refined to the communication channels of end-users.
Guideline intervention implementation also required feedback from end-users followed by an evaluation of the effectiveness of the intervention. A comprehensive evaluation framework measuring international impacts and outcomes was also designed for the 2018 International PCOS Guideline. The essential elements of this framework were a combination of objective data, such as digital interactions with the guideline and the compendium of guideline translation outputs (downloads, page views, uptake by invested groups), and self-reported impacts on knowledge and changes to evidence-informed practice from health professionals.
Below is a range of outputs and reach from the 2018 International PCOS Guideline translation programme:
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A freely accessible, consumer PCOS app (AskPCOS) providing comprehensive evidence-based PCOS health information calibrated by consumer interest, a self-diagnostic function, a symptoms tracker showing a correlation between lifestyle and symptom severity, facilitated conversations with a health professional, a Question Prompt List (QPL) to optimize health practitioner engagement, language translation and a commonly asked questions list. The app is currently being accessed in 151 countries and has 22.7K app users and 8.6K registered users.
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International PCOS guideline with 84k views and 41k downloads
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Webinar series with leading PCOS experts with a general attending of 100 participants per webinar.
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PCOS explainer short video viewed 700 times.
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Five co-designed practice algorithms promoting evidence-based practice (assessment and diagnosis, emotional well-being, lifestyle management, pharmacology and fertility).
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Five consumer info graphs to increase consumer PCOS-related health literacy and enhance self-management. Approximately 9k downloads.
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Two co-designed digital booklets catering for three health literacy levels (low to medium) 2.5k views
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A consumer booklet co-designed with and for the Aboriginal and Torres Strait Islander women.
Advancing research
The research recommendations from the guideline underpinned a subsequent National Centre for Research Excellence which was funded in Australia and has sought to coordinate high-quality research targeted to identified guideline research priorities. This included an advancing understanding of aetiology, which has seen significant recent advances in genetics and epigenetics, and a better understanding of natural history, which has seen the integration of very large datasets with high-quality well-defined populations through individual patient metre analysis; it also enabled multicentre randomised controlled trials (Mousa et al. 2020, Kiconco et al. 2021).
Throughout this time, however, the prevalence, complexity and burden of this condition have continued to be underappreciated and research underfunded compared to far less common conditions. Moving forward, advocacy for adequate and appropriate proportionate funding for a better understanding of the cause, natural history and treatment of this condition will be vital (Brakta et al. 2017).
Process to update the 2018 International Evidence-based PCOS Guideline and advance research
As scientific knowledge and health professionals’ and consumers’ preferences are in constant change, evidence-based guidelines need to be updated regularly to maintain relevance and validity. Little research has been undertaken to assess the optimal frequency when a guideline should be updated, but a general consensus is after every 3–5 years (Vernooij et al. 2014), as such we are currently in the process of updating the International Evidence-based PCOS Guideline with the aim for publication and dissemination in 2023.
The process of guideline update is time-consuming, labour-intensive and resource intensive. For many other guidelines, the update processes were not reported and many guideline developers recognised the lack of rigour in their methodology for guideline update (Alonso-Coello et al. 2011, Vernooij et al. 2014). We plan for the International PCOS Guideline update process to be as transparent and as rigourous as the initial guideline. Our previous experience with international collaboration has helped avoiding duplication of effort and research wastage. A detailed description of our guideline update process is described later. Our guideline efforts also specifically target both clinical care and updating research priorities.
Assembly of a guideline working group – funding, collaboration and governance
Funding resource to updating the International PCOS guideline came from the NHMRC-funded Centre of Research Excellence in Women’s Health in Reproductive Life (CRE WHiRL), as well as partner organisations including the American Society for Reproductive Medicine (ASRM), the Endocrine Society (ES) and the European Society of Human Reproduction and Embryology (ESHRE). Over 40 previously engaged and new international societies and consumer groups were invited to collaborate in updating the International PCOS Guideline where a final number of 37 societies and organisations from 19 countries agreed to participate. The project governance of the guideline update is outlined in Supplementary Fig. 2. The guideline update is governed by a Steering Committee, International Advisory Committee and a Management Committee to oversee the guideline update to ensure the integrity and successful delivery of the guideline. At every level of governance, representatives from multi-disciplinary senior clinical, research and consumer group are involved. Conflict of interest of each member is identified and declared with clear policies on the management of competing interests in guideline development aligning with the NHMRC standards to protect the integrity of guidelines and individuals involved.
The International Advisory Committee comprises five international multidisciplinary guideline development groups (GDGs) to cover each of the five following topic areas in the International PCOS Guideline:
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Screening, diagnostic assessment, risk assessment and life-stage
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Prevalence, screening, diagnostic assessment and management of emotional well-being and models of care
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Lifestyle, medical and surgical management
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Management of non-fertility features
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Screening, diagnostic assessment and management of infertility
The GDG members, including consumer advocacy representatives, were nominated by partner and collaborator organisations, based on clinical and academic skills or interests, expertise and geographical spread. By involving consumer advocacy representatives as active participants in decision-making environments, including in the GDG meetings, consumer perspectives were embedded in all decision-making processes of the guideline recommendations. All GDG members were required to attend mandatory workshops delivered by the Evidence Synthesis Team Methodology Consultant on the process of guideline update, evidence synthesis and appraisal, grading the strength of evidence and using clinical judgement to formulate clinical consensus recommendations in the absence of evidence according to the GRADE Evidence-to-Decision framework.
Reassessing clinical priority topics and research priorities and the need for an update
Following the engagement of partners, collaborators and funding bodies, an Evidence Synthesis Team was formed and tasked with prioritising the clinical topics and questions which will be addressed by the guideline. The prioritisation process involved: (i) consumer and community engagement; (ii) consultation with multidisciplinary GDGs, including consumers, to identify and prioritise clinical questions and define PICOs where needed and (iii) scoping the existing evidence to determine the type of evidence updating process required for a given question.
Consumer and community engagement
A key driver underpinning the prioritisation process was the extensive engagement with communities and consumers, coupled with formative research on the unmet needs of women with PCOS. Unpublished results from a global survey of over 1500 women with PCOS was conducted to ensure that key concerns and needs were incorporated. Here, those aspects of PCOS which were of most importance to women were determined and those topics ranked as a high priority were included as clinical questions in the guideline update.
Consultation and engagement with multidisciplinary GDGs, including consumers
Next, GDG members were asked to participate in a ranking survey to score the importance of each of the 56 questions included in the 2018 guideline as well as putting forward any new questions pertinent to be addressed by the guideline update. GDG members were asked to score each guideline question not only in terms of clinical importance but also with respect to their impression of the pace of evolution of evidence in the past 5 years. Aggregate median and interquartile values were collated and the questions were ranked in order of importance to assist the Evidence Synthesis Team to prioritise and ration resources when updating the evidence required for the guideline. A GDG member clinical lead/key contact was then allocated to each final included question by the GDG chair and co-chair, with the responsibility of liaising with the Evidence Synthesis Team throughout the evidence review process, interpreting the evidence found and drafting the clinical and research recommendations to be presented to the full GDG panel in late 2022.
Scoping the existing evidence to decide the extent of guideline update
The Evidence Synthesis Team used existing search strategies from the 2018 PCOS Guideline to scope the literature for new systematic reviews, timed from when the literature search for the 2018 guideline ended. This helps to gain an understanding of the current state of evidence to assist with decision-making on whether a new or updated evidence review is necessary. A decision for evidence update was made if existing systematic reviews were of poor quality, did not fully answer the question and/or there has since been new evidence likely to change previous recommendations emerged which needed to be incorporated into the evidence synthesis for the guideline. In circumstances where there is no new evidence, or new evidence is not likely to change recommendations, or if the nature of the question is unsuitable to be answered with a systematic review, the question will be described narratively in the guideline update.
Cultivating talent – engaging the early-career researchers
Sustaining impactful research and its translation into PCOS care requires recruiting, training and retaining next-generation researchers. One significant advancement of the current International PCOS Guideline update process in comparison to the 2018 PCOS Guideline is the inclusion of an ECR group working within the Evidence Synthesis Team (ECR-EST). The role of the ECR-EST is to conduct systematic reviews and/or meta-analyses of available evidence in the literature in order to assist the GDG to generate recommendations for the prioritised clinical questions. Members of the ECR-EST were recruited from the ECR networks of the NHMRC Centre for Research Excellence in Women’s Health in Reproductive Life (CRE WHiRL) and Androgen Excess and Polycystic Ovary Syndrome (AE-PCOS) Society and also those who were affiliated with members of the GDG. Currently, more than 30 international ECR-EST members from Australia, Brazil, Hong Kong, Sweden, Finland, the United States of America, United Kingdom and the Netherlands have been recruited. Each ECR was allocated to a clinical question matched with his/her research interest, trained in the GRADE approach and GRADE Evidence-to-Decision frameworks. Importantly each ECR was introduced to engage with renowned experts in the PCOS field who are also members of the GDG for mentorship and guidance throughout the evidence synthesis process (from designing the PICO framework, developing search strategies, data extraction, evidence synthesis planning and generation of GRADE evidence profile). Each step of the evidence synthesis was cross-checked by an expert methodological consultant from the Evidence Synthesis Team for accuracy and comprehensiveness. This innovative initiative was proposed by a member from the Evidence Synthesis Team, an ECR (C.T.) who is currently under the mentorship of H.T. and A.J. who are members of the PCOS Guideline project board, and it had received full support from the board.
To the best of our knowledge, the ECR-EST is the first of its kind in any Guideline development. By directly integrating ECRs into the International PCOS Guideline development, benefits to the ECRs are numerous. This initiative will not only build capacity and skillset for the ECRs but also expand the ECRs network beyond their local institution. In addition to gaining wider recognition among international experts in the PCOS field, ECRS will have the opportunity of being mentored by these eminent leaders. Working closely with these leaders is a unique experience for the ECRs and helps them build meaningful connections intended for future research collaborations. All ECRs involved will also be acknowledged in the PCOS Guideline, therefore improving the visibility and reputation of ECRs which are vital for their career advancement and promotion in the academic field. As ECRs represent the next generation of scientific leaders who should be supported with the opportunities and resources to excel, we encourage other guideline development groups to take the PCOS Guideline ECR-EST as a model and create similar initiatives for ECRs in their field.
Updating the guideline, external review, implementation and translation
All evidence synthesis for the International PCOS Guideline update was completed by October 2022 and presented along with the GRADE evidence profile to the relevant GDG clinical lead to draft evidence-based recommendations using the GRADE Evidence to Decision framework. Evidence and draft recommendations were presented, discussed and refined by the relevant full GDG panel over face-to-face meetings across 2 days for each GDG group from late October to early December 2022. Well-informed research recommendations were also generated from cause, diagnosis, natural history and treatment.
The final drafted updated International Evidence-Based PCOS Guideline will then be submitted for external review via public and targeted consultation of relevant professional colleges and societies in January 2023. This external review public consultation step is crucial to improve a guideline’s quality, legitimacy and acceptability to end users. It gives an opportunity to individuals or groups not engaged initially in the guideline development to give comment and feedback on the content of the guideline and can be especially helpful for identifying controversial issues or gaps in the evidence. All comments which arise from the public consultation will be managed via careful consideration and responding to, and a summary report of the public consultation process and subsequent changes made to the guideline will be documented as part of the process report of the guideline update. The final drafted 2023/2024 International Evidence-based PCOS Guideline will then be submitted to the Australian government NHMRC for approval, with the aim for publication and dissemination in late 2023 to early 2024, and endorsement internationally.
The central tenets of the translation process as listed earlier for the 2018 PCOS Guideline will be replicated for the translation of the 2023 PCOS Guideline, including extensive stakeholder engagement and co-design of translation outputs. We will build on the high level of uptake of our digital platform by refining and increasing the relevance and accessibility of our digital applications. Digital platforms allow for global reach, scale-up, multiple language translations, and centralised updating of tools and resources. We aim to provide an evidence-based PCOS consumer and health professional interface, to facilitate enhanced clinical interactions. In addition, we are currently in the process of evaluating the clinical impact of the 2018 PCOS Guideline in real-world setting of Australia. We will utilise data from the Australian Longitudinal Study on Women’s Health (ALSWH) (Lee et al. 2005, Loxton et al. 2018), one of the most successful Government funded population-based longitudinal cohort studies which involve over 80,000 women followed up over 30 years, and also data from the Australian Medicare Benefits Scheme (MBS), a national government-funded health insurance scheme. The evaluation will focus on examining the uptake of metabolic health and mental health screening in women with PCOS in Australia. Findings from the evaluation will help inform the translation team for more effective dissemination of 2023/2024 International Evidence-based PCOS Guideline within Australia.
Advancing further research
Given that robust research recommendations will be developed here with the input of clinicians, academics and consumers around the world through priority setting, evidence synthesis and guideline development group meetings, as well as international peer review, this should set the stage for advancing research in this field. In translating this message, specific recommendations will be generated around the need for greater research efforts in this much-neglected condition. Correspondence and advocacy on the targeted need for research will be included in the research translation. This will include correspondence to major funding bodies, endorsed by partner societies across multiple countries. It will include strong advocacy from consumer groups who are passionate in this area and will focus on advancing research in PCOS. The emphasis will be on the full breadth of the condition and on the genetic and hormonal underpinnings. Through this coordinated international effort, we anticipate and will monitor a tangible increase in engagement, awareness, funding and quality of research in priority areas in this condition.
Box 1 Aims and principles of the 2018 International PCOS guideline and the 2023 update.
These guidelines aim to ensure that women with PCOS receive optimal, evidence-based care, with a focus on prevention of complications.
AIMS
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Re-engage international representation and incorporate international perspectives on PCOS care
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Follow AGREE II-compliant best practice processes, independently approved by NHMRC
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Include international consumer engagement
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Develop an updated, international comprehensive guideline for the diagnosis, assessment and management of women with PCOS
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Consolidate a single source of international evidence-based recommendations to guide the clinical practice of women with PCOS and reduce variation in practice worldwide
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Provide a basis for improving patient outcomes, promoting standardized care and informing the development of standards to assess the clinical practice of healthcare professionals internationally
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Update and expand support tools and resources for the education and training of healthcare professionals
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Implement the evidence-based guideline into practice to drive early diagnosis, risk screening and appropriate management of this common, heterogeneous condition across the lifespan
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Facilitate upskilling and empowerment of patients
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Promote research and translation into practice and policy
PRINCIPLES
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The need for consumers and health professionals to recognise the life course implications of PCOS
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Health professionals and women need to partner together in managing PCOS and preventing the complications of the condition
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Consideration should be given to the exacerbating factors of PCOS
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Metabolic, reproductive and psychological features of PCOS should be considered
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Education, optimal lifestyle and emotional well-being are critical to therapy at all life stages and with the management of all PCOS features and complications
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The indigenous and high-risk ethnic population will be considered in developing the guideline
AGREE II, Appraisal of Guidelines for Research & Evaluation II
NHMRC, National Health and Medical Research Council
PCOS, polycystic ovary syndrome
Conclusion
PCOS is the most common endocrinopathy in women of reproductive age with substantial long-term health effects spanning across metabolic, reproductive and psychological systems, affecting women’s biopsychosocial aspects of life (Teede et al. 2010). Compelling evidence showed that the incidence of PCOS is increasing globally and yet we know that PCOS remains underdiagnosed, misunderstood and neglected (Liu et al. 2021). Research has helped advance knowledge in PCOS. Genomic studies indicated that all PCOS diagnostic criteria and phenotypes share similar underlying genetic architecture and biological mechanisms, thereby supporting the need for a unified approach to PCOS. However, translation of research outcomes into health policy and practice is key to provide better quality of care for patients and improving health outcomes and this process can also in aid, priority, setting and focus on critical priorities for future research. Health professionals, researchers, consumers and policymakers need to work together across the translational research continuum to integrate and advance novel research and co-design in translation and deliver evidence synthesis and guidelines.
Supplementary materials
This is linked to the online version of the paper at https://doi.org/10.1530/JOE-22-0232.
Declaration of interest
All authors are involved in the International PCOS Guideline development and update process.
Funding
Dr Chau T. Tay holds a seed grant from the National Health and Medical Research Council (NHMRC) through the Centre of Research Excellence in Women’s Health in Reproductive Life (CRE WHiRL). Ar Aya Mousa holds a NHMRC biomedical research fellowship. Dr Anju E. Joham holds a CRE WHiRL Early to Mid-career Fellowship. Prof Helena J. Teede holds a NHMRC Medical Research Future Fund (MRFF) Fellowship.
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