95 Challenges and uncertainties regarding polycystic ovary syndrome (PCOS) and the potential for overdiagnosis: clinicians’ views and experiences

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Abstract

Objectives

The diagnostic criteria for polycystic ovary syndrome (PCOS) were broadened by experts in 2003, resulting in the inclusion of women with milder forms. This has contributed to a substantial increase in the number of women diagnosed. PCOS is associated with adverse reproductive, metabolic and cardiovascular outcomes, however not all women fitting the expanded criteria may be at risk. Although signs of PCOS often first appear during adolescence, symptoms of PCOS overlap with normal signs of pubertal development, making diagnosis challenging. Currently there are no clear criteria to differentiate normal variability from the abnormality of PCOS, especially in young women. Although the diagnosis is appropriate and beneficial for some women, such as those with severe forms, the benefit is uncertain for women with milder variants of the syndrome. We aimed to understand clinicians’ views about PCOS, and how they manage and communicate these uncertainties with their patients in practice.

Method

Doctors who diagnose and manage adult and/or adolescent women with PCOS (general practitioners, endocrinologists and gynaecologists) around Australia were recruited via professional organisations, specialist groups and through snowballing. We conducted 30 semi-structured telephone interviews. Topics included challenges and uncertainties with diagnosis and management of PCOS, patient communication, benefits and harms of a diagnosis, and the potential for overdiagnosis. Interviews were audio-recorded, transcribed and analysed thematically.

Results

Clinicians expressed a range of views regarding the uncertainties in the diagnosis and management of PCOS. Many clinicians reported difficulties with dispelling women’s preconceptions about PCOS (e.g. never able to conceive) as a result of misinformation online, and discussed the challenges with communicating the unpredictability of long-term consequences. Many clinicians expressed the importance of early diagnosis as it provided the opportunity to make lifestyle changes and initiate family planning. On the other hand, others were cautious about labelling women prematurely or inaccurately, and hesitant to discuss long-term consequences in the first consultation out of concern it might cause unnecessary anxiety, especially for adolescents and young women.

Conclusions

Clinicians who diagnose and manage PCOS provide valuable perspectives regarding the current issues surrounding diagnostic criteria and uncertainties regarding diagnosis and management. The key findings and their implications for future research and clinical practice will be discussed, such as the importance of effective communication and tailored care in minimising the potential harmful impact of the diagnosis and improving patient-centred outcomes.

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