International PCOS guideline clinical research priorities roadmap: a co-designed approach aligned with end-user priorities in a neglected women’s health condition
File(s)
Published version
Author(s)
Type
Journal Article
Abstract
Background
Polycystic ovary syndrome (PCOS) is a common endocrinopathy with significant reproductive, metabolic, and psychological complications. Consensus on PCOS clinical research priorities across end-users is fundamental and necessitates a robust co-development of a clinical research roadmap to guide international research efforts.
Methods
A multistage process included: i) international surveys of women and healthcare providers to identify research priorities and unmet needs; ii) interrogation of systematic reviews conducted for the International PCOS Guideline to identify research gaps; iii) International PCOS Guideline Network consensus generated clinical research roadmap; and iv) international peer review for external validation.
Findings
A codesigned survey engaging 1278 women with PCOS and 1474 healthcare providers found general concordance on research priorities. International PCOS Guideline development processes identified gaps in the literature and coproduced over 150 research priorities throughout the women’s life course, affirmed in international peer review. Key themes included: 1) Optimizing PCOS diagnosis; understanding natural history across diverse populations and life stages; detecting and preventing complications, and integrating and interrogating large data assets; 2) developing evidence-based resources, exploring optimal modes for information provision and models of care; 3) exploring effective lifestyle and weight management strategies; minimising weight stigma; 4) exploring intervention effects (including treatment efficacy, safety, cost-effectiveness, and long-term follow-up) on diverse features of PCOS across subgroups; and 5) optimising preconception care and fertility treatments in PCOS.
Interpretation
This rigorously coproduced International PCOS Guideline clinical research roadmap addresses stakeholder priorities to guide future clinical research in this common yet neglected condition. The roadmap complements the established PCOS Core Outcome Set to enhance research quality, and tackles evidence-practice gaps to improve health outcomes for women with PCOS throughout their life course.
Polycystic ovary syndrome (PCOS) is a common endocrinopathy with significant reproductive, metabolic, and psychological complications. Consensus on PCOS clinical research priorities across end-users is fundamental and necessitates a robust co-development of a clinical research roadmap to guide international research efforts.
Methods
A multistage process included: i) international surveys of women and healthcare providers to identify research priorities and unmet needs; ii) interrogation of systematic reviews conducted for the International PCOS Guideline to identify research gaps; iii) International PCOS Guideline Network consensus generated clinical research roadmap; and iv) international peer review for external validation.
Findings
A codesigned survey engaging 1278 women with PCOS and 1474 healthcare providers found general concordance on research priorities. International PCOS Guideline development processes identified gaps in the literature and coproduced over 150 research priorities throughout the women’s life course, affirmed in international peer review. Key themes included: 1) Optimizing PCOS diagnosis; understanding natural history across diverse populations and life stages; detecting and preventing complications, and integrating and interrogating large data assets; 2) developing evidence-based resources, exploring optimal modes for information provision and models of care; 3) exploring effective lifestyle and weight management strategies; minimising weight stigma; 4) exploring intervention effects (including treatment efficacy, safety, cost-effectiveness, and long-term follow-up) on diverse features of PCOS across subgroups; and 5) optimising preconception care and fertility treatments in PCOS.
Interpretation
This rigorously coproduced International PCOS Guideline clinical research roadmap addresses stakeholder priorities to guide future clinical research in this common yet neglected condition. The roadmap complements the established PCOS Core Outcome Set to enhance research quality, and tackles evidence-practice gaps to improve health outcomes for women with PCOS throughout their life course.
Date Issued
2024-12-01
Date Acceptance
2024-10-24
Citation
EClinicalMedicine, 2024, 78
ISSN
2589-5370
Publisher
Elsevier
Journal / Book Title
EClinicalMedicine
Volume
78
Copyright Statement
© 2024 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Subjects
Polycystic ovary syndrome
Public and patient involvement
Consumer and community involvement
Research
Infertility
Diabetes mellitus
Evidence-based medicine
Publication Status
Published
Article Number
102927
Date Publish Online
2024-11-15