Insights from the EGOI-PCOS patient survey: Diagnosis, treatment, and quality of life according to Italian PCOS patients

Background

Polycystic ovary syndrome (PCOS) is an endocrine-metabolic disorder; however, the current guidelines do not adequately address the metabolic aspect. By gathering patients’ perspectives, this survey investigates potential issues with the current diagnostic process to identify key points that need addressing in the future.

Method

A survey comprising of 49 multiple-choice question was distributed to members of the Italian PCOS community NoiPCOS, including topics such as demographics, PCOS diagnosis experience, symptom management, quality of life, and access to information about PCOS.

Results

769 women aged 18–40 responded to the survey. 72.2% of responders were employed and perceived their socio-economic status as “good”. PCOS diagnosis was primarily obtained in adolescence (35.1%) or late adolescence (33.6 %), with the most common symptoms being polycystic ovaries (85.8%), irregular menses (80.4%), and hirsutism (64.1%). Moreover, PCOS symptoms were seen to severely impact the mental health for 64.7% of responders. Treatments prescribed for PCOS were diet (49.5%), exercise (46.9%), metformin (27.6%), hormonal contraception (26.4%), and myo-inositol and D-chiro-inositol (25.2%). When accessing information about PCOS, women often relied on unofficial sources (i.e. internet sources) rather guidance from their physician.

Conclusion

Findings of this survey highlight that a thorough update of PCOS diagnostic criteria is required, which should consider the endocrine and metabolic aspects of the syndrome. Such revision should enable a more accurate, precise diagnosis that translates to effective therapy. Finally, any reconsideration of the PCOS guidelines should increase the perceived reliability by patients of medical care, reducing the communication gap between specialists and patients.