The Needs of Women and Healthcare Providers regarding Polycystic Ovary Syndrome Information, Resources, and Education: A Systematic Search and Narrative Review

Gibson-Helm, Melanie; Tassone, Eliza C.; Teede, Helena; Dokras, Anuja; Garad, Rhonda

doi:10.1055/s-0038-1668086

Cited by 31 publications

(18 citation statements)

References 42 publications

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“…More than 40% of women with PCOS reported ineffective or no lifestyle management advice during their healthcare encounter [17,18 ▪ ]. Many others report that psychological features are neglected [11,21]. Both individual- and system-related barriers to effective lifestyle management exist.…”

Section: Current Challenges and Gaps In Caring For Women With Pcosmentioning

confidence: 99%

Better care for women with polycystic ovary syndrome – a proposal for an international evidence based best practice framework to improve care

Tay

Joham

Moran

et al. 2022

Current Opinion in Endocrinology, Diabetes &Amp; Obesity

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Purpose of reviewPolycystic ovary syndrome (PCOS) is the most common endocrinopathy in reproductive-age women and has reproductive, pregnancy, metabolic, dermatologic, and psychologic complications. Here we summarize current challenges and gaps in PCOS care, and propose a pathway forward to implement high quality international guideline recommendations and resources, through development of a best practice framework and benchmarking for evidence-based, patient-centric models of care (MoC).Recent findingsThe majority of women with PCOS are unsatisfied with their healthcare experience due to delayed diagnosis, inadequate information provision and inconsistent advice from diverse healthcare providers. The 2018 International Evidence-based PCOS Guideline recommended co-development of evidence-based, patient centric MoC. High-quality guidelines and resources are now available to help women understand and manage PCOS and to assist healthcare professionals to partner in their care. Leveraging these and developing a best practice framework for patient centric PCOS MoC is now a vital to optimise care and outcomes in this common and neglected condition.SummaryCollaborative interdisciplinary efforts from academic leads, healthcare professionals and consumers are now needed to co-develop a framework and benchmarking performance indicators to guide evidence-based, patient centric PCOS MOC to improve experience and outcomes.

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Section: Current Challenges and Gaps In Caring For Women With Pcosmentioning

confidence: 99%

Better care for women with polycystic ovary syndrome – a proposal for an international evidence based best practice framework to improve care

Tay

Joham

Moran

et al. 2022

Current Opinion in Endocrinology, Diabetes &Amp; Obesity

Self Cite

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“…(4) What implications these findings have? (5) What kinds of data are needed to achieve an automated diagnosis system? (6) How to design proposed architecture?…”

Section: Research Objectivesmentioning

confidence: 99%

“…It is considered the leading cause of female infertility. Both luteinizing hormone and follicle stimulating hormone are essential for the maturation of egg in the ovaries [5,6] and PCOS condition disrupts the balance of these hormones in the body. Apart from enlargement of ovaries, another distinct characteristic of PCOS disorder in female reproductive system is the development of follicular cysts and the formation of pre-mature follicles in the ovary.…”

Section: Introductionmentioning

confidence: 99%

Medical Image Processing: Detection and Prediction of PCOS – A Systematic Literature Review

Pulluparambil

Bhat

2021

IJHSP

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Purpose: Considered as the most common hormonal disorder among women, polycystic ovary syndrome or PCOS affects 1 in 10 reproductive aged women (18 - 44 years). Ultrasonography is applied for assessing the ovaries to detect PCOS. The patients affected by PCOS consist of 10-12 cysts present in the ovary, but more than 10 cysts are more enough to diagnose the disorder from the ultrasound images. Then, by examining the ultrasound the presence of follicles will be determined. Therefore, the image processing approaches have assisted to identify the characteristics like follicle size, number of follicles and structure to minimize the workload and time of doctors. PCOS do not have better treatment and effective diagnosis. This paper includes reviewing a summary of some of the researches that have been going in area of medical diagnosis. Based on the review, research gap, research agendas to carry out further research are identified. Approach: A detailed study on the algorithms used in medical image processing and classification. Findings: The study indicated that most of the classification of polycystic ovarian syndrome is done merely on the clinical data sets. The new hybrid methodology proposed will be more precise as both images and lifestyle are analysed. Originality: The type of data required for detection system are studied and the architecture and schematic diagram of a proposed system are included. Paper Type: Literature Review.

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“…Prior research has considered women’s experiences of PCOS (e.g., [ 9 , 18 , 19 ]), their information-needs [ 19 , 28 – 30 ], the accuracy of PCOS information online (e.g., [ 31 ]) and women’s information-seeking behaviour relating to PCOS [ 28 , 30 ]. Most prior research on information-seeking and information needs focuses on women’s practical and clinical needs - e.g., for diagnosis and treatment plans.…”

Section: Introductionmentioning

confidence: 99%

Women’s use of online health and social media resources to make sense of their polycystic ovary syndrome (PCOS) diagnosis: a qualitative study

Gomula,

Warner,

Blandford

2024

BMC Women's Health

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Background With the growing availability of online health resources and the widespread use of social media to better understand health conditions, people are increasingly making sense of and managing their health conditions using resources beyond their health professionals and personal networks. However, where the condition is complex and poorly understood, this can involve extensive “patient work” to locate, interpret and test the information available. The overall purpose of this study was to investigate how women with polycystic ovary syndrome (PCOS) across two healthcare systems engage with online health resources and social media to better understand this complex and poorly understood lifelong endocrine disorder. Methods A semi-structured interview study was conducted with women from the US ($$N=8$$ N = 8 ) and UK ($$N=7$$ N = 7 ) who had been diagnosed with PCOS within the previous five years. Transcribed data was analysed using a reflexive thematic analysis method. Results We highlight the information needs and information-seeking strategies women use to make sense of how PCOS affects them, to gain emotional support, and to help them find an effective treatment. We also show how women with PCOS use online health and social media resources to compare themselves to women they view as “normal” and other women with PCOS, to find their sense of “normal for me” along a spectrum of this disorder. Conclusion We draw on previous models of sense-making and finding normal for other complex and sensitive health conditions to capture the nuances of making sense of PCOS. We also discuss implications for the design and use of social media to support people managing PCOS.

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The Needs of Women and Healthcare Providers regarding Polycystic Ovary Syndrome Information, Resources, and Education: A Systematic Search and Narrative Review

Cited by 31 publications

References 42 publications

Better care for women with polycystic ovary syndrome – a proposal for an international evidence based best practice framework to improve care

Better care for women with polycystic ovary syndrome – a proposal for an international evidence based best practice framework to improve care

Medical Image Processing: Detection and Prediction of PCOS – A Systematic Literature Review

Women’s use of online health and social media resources to make sense of their polycystic ovary syndrome (PCOS) diagnosis: a qualitative study

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