Endocrine Abstracts

Introduction: With a global prevalence of around 10%, polycystic ovary syndrome (PCOS) is a common endocrine condition affecting women. Despite its prevalence, limited evidence exists around the condition and its impact on patients. Qualitative research provides insights into symptoms and experiences faced by women with PCOS that can affect management and compliance.

Aim: A systematic review was undertaken to evaluate the current literature on the experiences, perceptions and opinions of women with PCOS, with an aim to highlight key areas for improvement in the standard of care and education on PCOS.

Methods: A comprehensive search of seven electronic databases was conducted between July 2021 and October 2021. Studies focusing on both adolescent and adult patients with PCOS were considered for inclusion. The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool. 1615 articles were screened and 34 full-text articles were used in the systematic review and subsequently coded using NVivo 12 software.

Results: Thematic analysis revealed 5 domains: Signs/Symptoms of PCOS, Diagnosis, Management, Improving Outcomes, Perceptions of women with PCOS regarding their care.Common themes included poor mental health (25/34 studies), subfertility (16/34 studies), and frustration or dissatisfaction with their diagnostic journey (16/34 studies). There were a number of concerns regarding the symptoms experienced by women, particularly difficulty losing weight and irregular menstruation. The majority of the literature reported negative experiences towards the standard of care. Issues surrounding diagnosis, such as a delay and under-diagnosis, led to cynicism towards healthcare providers and poor health outcomes. Only four studies suggested that a diagnosis of PCOS was a relief for patients. The main barrier perceived by patients was a lack of knowledge amongst healthcare professionals. Additionally, uptake of management advice was poor for most patients, as they experienced personal, educational and healthcare professional related barriers. Research indicated that empowering women with information helped with professional interactions and subsequent reduction of symptoms as women take a more patient-centered role in their management.

Conclusion: Despite its prevalence, women with PCOS feel under-supported by healthcare professionals and society in general. Prompt diagnosis and provision of appropriate information about the condition and its long term impact are required. Enhancing educational opportunities and access may empower women with PCOS and lead to improved clinical outcomes and reduced morbidity.