A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources
File(s)
Published version
Author(s)
Type
Journal Article
Abstract
Introduction: PCOS-related literature is mostly dominated by the medical perspective. However, the condition’s lifelong, far reaching, and multifaceted impacts highlight the importance to gain the perspectives from those with PCOS. Therefore, we performed a systematic review to explore the current literatures and gaps around the experiences and perceptions of those living with PCOS
Method: A comprehensive search of seven electronic databases was conducted between July and October 2021. A total 34 from 1615 screened articles were included in this systematic review and subsequently coded using NVivo 12 software. The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool.
Results: Five domains were generated from the data: Signs/Symptoms, Diagnosis, Management, Perceptions, Resources and Improving Outcomes. Dissatisfaction surrounding the experience of diagnosis was common. Concerns surrounded perceived lack of knowledge from healthcare professionals and delays in diagnosis. Individual studies on adults and adolescents shared similar feelings. The consensus was found to be that current management was vague and generalised. Symptoms such as hirsutism, obesity, irregular menstruation challenge personal and societal expectations of femininity. Online PCOS resources are popular amongst those with PCOS but most of them lack evidence. A call for more culturally specific resources was found to be common ground amongst those with PCOS.
Conclusion: Overall dissatisfaction amongst adults and adolescents regarding their diagnostic journey of PCOS. Tailored and culturally specific PCOS advice and management is necessary and can be achieved through co-creation of resources between healthcare professionals and those with PCOS.
Systematic review registration: https://www.crd.york.ac.uk/prospero/, identifier CRD42021272371.
Method: A comprehensive search of seven electronic databases was conducted between July and October 2021. A total 34 from 1615 screened articles were included in this systematic review and subsequently coded using NVivo 12 software. The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool.
Results: Five domains were generated from the data: Signs/Symptoms, Diagnosis, Management, Perceptions, Resources and Improving Outcomes. Dissatisfaction surrounding the experience of diagnosis was common. Concerns surrounded perceived lack of knowledge from healthcare professionals and delays in diagnosis. Individual studies on adults and adolescents shared similar feelings. The consensus was found to be that current management was vague and generalised. Symptoms such as hirsutism, obesity, irregular menstruation challenge personal and societal expectations of femininity. Online PCOS resources are popular amongst those with PCOS but most of them lack evidence. A call for more culturally specific resources was found to be common ground amongst those with PCOS.
Conclusion: Overall dissatisfaction amongst adults and adolescents regarding their diagnostic journey of PCOS. Tailored and culturally specific PCOS advice and management is necessary and can be achieved through co-creation of resources between healthcare professionals and those with PCOS.
Systematic review registration: https://www.crd.york.ac.uk/prospero/, identifier CRD42021272371.
Date Issued
2022-12-02
Date Acceptance
2022-11-01
Citation
Frontiers in Endocrinology, 2022, 13
ISSN
1664-2392
Publisher
Frontiers Media S.A.
Journal / Book Title
Frontiers in Endocrinology
Volume
13
Copyright Statement
© 2022 Lau, Elghobashy, Thanki, Ibegbulam, Latthe, Gillett, O’Reilly, Arlt, Lindenmeyer, Kempegowda and PCOS SEva Working Group. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
License URL
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/36531482
Subjects
ADOLESCENTS
BODY-MASS INDEX
culturally appropriate resources
DEPRESSION
Endocrinology & Metabolism
expectations
IMPLEMENTATION
INFORMATION
Life Sciences & Biomedicine
lived experience
MANAGEMENT
OVERWEIGHT
PCOS
perspectives
polycystic ovary syndrome
QUALITY-OF-LIFE
satisfaction
Science & Technology
SYNDROME PCOS
WOMENS EXPERIENCES
Publication Status
Published
Coverage Spatial
Switzerland
Article Number
1064937
Date Publish Online
2022-12-02