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

PCOS SEva Working Group

doi:10.3389/fendo.2022.1064937

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

PCOS SEva Working Group

Research output: Contribution to journal › Article › peer-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.

Original language	English
Article number	1064937
Journal	Frontiers in Endocrinology
Volume	13
DOIs	https://doi.org/10.3389/fendo.2022.1064937
Publication status	Published - 2 Dec 2022

Bibliographical note

Keywords

Adult
Adolescent
Female
Humans
Polycystic Ovary Syndrome/therapy
Hirsutism/diagnosis
Menstruation Disturbances/diagnosis
Behavior Therapy
lived experience
satisfaction
polycystic ovary syndrome
PCOS
perspectives
culturally appropriate resources
expectations
Endocrinology

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.3389/fendo.2022.1064937Licence: Creative Commons: Attribution (CC BY)

LauGM2022ASystematicFinal published version, 906 KBLicence: Creative Commons: Attribution (CC BY)

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Dissecting Androgen excess and metabolic dysfunction - an Integrated SYstems approach to PolyCystic Ovary Syndrome (DAISY-PCOS)
Dunn, W., Tino, P., Deeks, J., Arlt, W., Manolopoulos, K., O'Reilly, M. & Afford, S.
THE WELLCOME TRUST
1/04/18 → 1/10/24
Project: Research
Dissecting Androgen excess and metabolic dysfunction - an Integrated SYstems approach to PolyCystic Ovary Syndrome (DAISY-PCOS)
Lindenmeyer, A. & Arlt, W.
THE WELLCOME TRUST
1/01/20 → 1/03/23
Project: Research

Cite this

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

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.",

keywords = "Adult, Adolescent, Female, Humans, Polycystic Ovary Syndrome/therapy, Hirsutism/diagnosis, Menstruation Disturbances/diagnosis, Behavior Therapy, lived experience, satisfaction, polycystic ovary syndrome, PCOS, perspectives, culturally appropriate resources, expectations, Endocrinology",

author = "{PCOS SEva Working Group} and Lau, {Gar Mun} and Mirna Elghobashy and Mansi Thanki and Shirley Ibegbulam and Pallavi Latthe and Gillett, {Caroline D T} and O'Reilly, {Michael W} and Wiebke Arlt and Antje Lindenmeyer and Punith Kempegowda",

note = "Copyright {\textcopyright} 2022 Lau, Elghobashy, Thanki, Ibegbulam, Latthe, Gillett, O{\textquoteright}Reilly, Arlt, Lindenmeyer, Kempegowda and PCOS SEva Working Group.",

year = "2022",

month = dec,

day = "2",

doi = "10.3389/fendo.2022.1064937",

language = "English",

volume = "13",

journal = "Frontiers in Endocrinology",

issn = "1664-2392",

publisher = "Frontiers",

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T1 - A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources

AU - PCOS SEva Working Group

AU - Lau, Gar Mun

AU - Elghobashy, Mirna

AU - Thanki, Mansi

AU - Ibegbulam, Shirley

AU - Latthe, Pallavi

AU - Gillett, Caroline D T

AU - O'Reilly, Michael W

AU - Arlt, Wiebke

AU - Lindenmeyer, Antje

AU - Kempegowda, Punith

PY - 2022/12/2

Y1 - 2022/12/2

N2 - 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.

AB - 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.

KW - Adult

KW - Adolescent

KW - Female

KW - Humans

KW - Polycystic Ovary Syndrome/therapy

KW - Hirsutism/diagnosis

KW - Menstruation Disturbances/diagnosis

KW - Behavior Therapy

KW - lived experience

KW - satisfaction

KW - polycystic ovary syndrome

KW - PCOS

KW - perspectives

KW - culturally appropriate resources

KW - expectations

KW - Endocrinology

U2 - 10.3389/fendo.2022.1064937

DO - 10.3389/fendo.2022.1064937

M3 - Article

C2 - 36531482

SN - 1664-2392

VL - 13

JO - Frontiers in Endocrinology

JF - Frontiers in Endocrinology

M1 - 1064937

ER -

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

Abstract

Bibliographical note

Keywords

UN SDGs

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Projects

Dissecting Androgen excess and metabolic dysfunction - an Integrated SYstems approach to PolyCystic Ovary Syndrome (DAISY-PCOS)

Dissecting Androgen excess and metabolic dysfunction - an Integrated SYstems approach to PolyCystic Ovary Syndrome (DAISY-PCOS)

Cite this