Healthcare and research priorities for women with polycystic ovary syndrome in the UK National Health Service: A modified Delphi method
Author(s)
Type
Journal Article
Abstract
OBJECTIVE: Polycystic ovary syndrome (PCOS) is a chronic lifelong condition affecting up to 20% of women worldwide. There is limited input from affected women to guide the provision of healthcare services and future research needs. Our objective was to scope the healthcare and research priorities of women with PCOS in the United Kingdom. DESIGN: A three-staged modified Delphi method, consisting of two questionnaires and a consensus meeting involving lay representatives and healthcare professionals. PATIENTS AND MEASUREMENTS: Lay patient representatives of women with PCOS. Participants were asked to identify and rank healthcare and research priorities for their importance. RESULTS: Six hundred and twenty-four lay participants took part in our Delphi method. Over 98% were diagnosed with PCOS (614/624, 98.4%). More than half experienced difficulties to receive a PCOS diagnosis (375/624, 60%), and the majority found it difficult to access specialised PCOS health services in the NHS (594/624, 95%). The top two healthcare priorities included better education for health professionals on the diagnosis and management of PCOS (238/273, 87.1%) and the need to set up specialist PCOS services (234/273, 85.7%). The top two research priorities focused on identifying better treatments for irregular periods (233/273, 85.3%) followed by better tests for early PCOS diagnosis (230/273, 84.2%). CONCLUSIONS: We identified 13 healthcare and 14 research priorities that reflect the current health needs of women with PCOS in the United Kingdom. Adopting these priorities in future healthcare and research planning will help to optimise the health of women with PCOS and increase patient satisfaction.
Date Issued
2024-05
Date Acceptance
2024-02-16
Citation
Clinical Endocrinology, 2024, 100 (5), pp.459-465
ISSN
0300-0664
Publisher
Wiley
Start Page
459
End Page
465
Journal / Book Title
Clinical Endocrinology
Volume
100
Issue
5
Copyright Statement
© 2024 The Authors. Clinical Endocrinology published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any
medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/38420872
Subjects
Delphi
patient involvement
polycystic ovary
research priorities
survey
Publication Status
Published
Coverage Spatial
England
Date Publish Online
2024-02-29