Are expanding disease definitions unnecessarily labelling women with polycystic ovary syndrome?

Clinical context

Polycystic ovary syndrome (PCOS) is the most commonly diagnosed endocrine disorder affecting reproductive aged women and is associated with adverse reproductive, metabolic, and cardiovascular outcomes


Diagnostic change

The Rotterdam consensus expanded the criteria from the National Institutes of Health (NIH) to include polycystic ovaries, introducing a number of different PCOS phenotypes


Rationale for change

Early identification, diagnosis, and management of PCOS could prevent the adverse long term implications by implementing lifestyle modifications and screening for comorbidities


Leap of faith

Diagnosis will provide relief to symptom burden and allow implementation of lifestyle changes to improve cardiovascular risk and increase fertility


Increase in disease

Estimated number of diagnoses in reproduction aged women increased from 4-6.6% for NIH criteria to 21% for Rotterdam criteria, depending on the population studied

Evidence of overdiagnosis

Diagnoses have rapidly increased, the criteria are of questionable use in adolescents and young women, and the non-hyperandrogenic phenotypes of PCOS do not have the same associated adverse implications as the hyperandrogenic phenotypes

Harms from overdiagnosis

In addition to taking long term medications, labelling healthy women with PCOS might negatively impact their psychological health and wellbeing, inducing fear and anxiety about future fertility and long term health

Uncertainties

Suggestion of overdiagnosis is based on the rise in diagnoses and the uncertainties that exist in the diagnosis, progression, and treatment of PCOS

Conclusion

A PCOS label might not be needed to effectively treat many symptoms of PCOS, as the label may not change the type or intensity of the intervention. We recommend carefully weighing up the benefits and harms for each individual woman. For those at risk of overdiagnosis, taking a slower, stepped approach to diagnosis might optimise benefits and reduce harm from disease labelling.

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Influence of the disease label ‘polycystic ovary syndrome’ on intention to have an ultrasound and psychosocial outcomes: a randomised online study in young women

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The benefits and harms of receiving a polycystic ovary syndrome diagnosis: a qualitative study of women's experiences