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      A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources

      systematic-review

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          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.

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          Most cited references55

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          Using thematic analysis in psychology

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            Methods for the thematic synthesis of qualitative research in systematic reviews

            Background There is a growing recognition of the value of synthesising qualitative research in the evidence base in order to facilitate effective and appropriate health care. In response to this, methods for undertaking these syntheses are currently being developed. Thematic analysis is a method that is often used to analyse data in primary qualitative research. This paper reports on the use of this type of analysis in systematic reviews to bring together and integrate the findings of multiple qualitative studies. Methods We describe thematic synthesis, outline several steps for its conduct and illustrate the process and outcome of this approach using a completed review of health promotion research. Thematic synthesis has three stages: the coding of text 'line-by-line'; the development of 'descriptive themes'; and the generation of 'analytical themes'. While the development of descriptive themes remains 'close' to the primary studies, the analytical themes represent a stage of interpretation whereby the reviewers 'go beyond' the primary studies and generate new interpretive constructs, explanations or hypotheses. The use of computer software can facilitate this method of synthesis; detailed guidance is given on how this can be achieved. Results We used thematic synthesis to combine the studies of children's views and identified key themes to explore in the intervention studies. Most interventions were based in school and often combined learning about health benefits with 'hands-on' experience. The studies of children's views suggested that fruit and vegetables should be treated in different ways, and that messages should not focus on health warnings. Interventions that were in line with these suggestions tended to be more effective. Thematic synthesis enabled us to stay 'close' to the results of the primary studies, synthesising them in a transparent way, and facilitating the explicit production of new concepts and hypotheses. Conclusion We compare thematic synthesis to other methods for the synthesis of qualitative research, discussing issues of context and rigour. Thematic synthesis is presented as a tried and tested method that preserves an explicit and transparent link between conclusions and the text of primary studies; as such it preserves principles that have traditionally been important to systematic reviewing.
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              Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome

              (2004)
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                Author and article information

                Contributors
                Journal
                Front Endocrinol (Lausanne)
                Front Endocrinol (Lausanne)
                Front. Endocrinol.
                Frontiers in Endocrinology
                Frontiers Media S.A.
                1664-2392
                02 December 2022
                2022
                : 13
                : 1064937
                Affiliations
                [1] 1 College of Medical and Dental Sciences, University of Birmingham , Birmingham, United Kingdom
                [2] 2 School of Pharmacy, University of Birmingham , Birmingham, United Kingdom
                [3] 3 Birmingham Women’s Hospital, Birmingham Women’s and Children’s National Health Service (NHS) Foundation Trust , , Birmingham, United Kingdom
                [4] 4 Institute of Metabolism and Systems Research, University of Birmingham , Birmingham, United Kingdom
                [5] 5 Royal College of Surgeons in Ireland (RCSI) University of Medicine and Health Sciences , Dublin, Ireland
                [6] 6 Department of Endocrinology, Queen Elizabeth Hospital, University Hospitals Birmingham National Health Service (NHS) Foundation Trust , Birmingham, United Kingdom
                [7] 7 Institute of Clinical Sciences, University of Birmingham , Birmingham, United Kingdom
                Author notes

                Edited by: Ali Abbara, Imperial College London, United Kingdom

                Reviewed by: Vikram Sinai Talaulikar, University College London Hospitals NHS Foundation Trust, United Kingdom; Stanley Andrisse, Howard University, United States

                *Correspondence: Punith Kempegowda, p.kempegowda@ 123456bham.ac.uk

                †These authors have contributed equally to this work and share first authorship

                ‡These authors share senior authorship

                This article was submitted to Reproduction, a section of the journal Frontiers in Endocrinology

                Article
                10.3389/fendo.2022.1064937
                9755159
                36531482
                fd38545b-0e61-44e4-99a8-96a5288c3701
                Copyright © 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.

                History
                : 08 October 2022
                : 01 November 2022
                Page count
                Figures: 2, Tables: 1, Equations: 0, References: 56, Pages: 12, Words: 5862
                Categories
                Endocrinology
                Systematic Review

                Endocrinology & Diabetes
                polycystic ovary syndrome,pcos,lived experience,expectations,perspectives,satisfaction,culturally appropriate resources

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