A global study of more than 7,700 participants found that most patients with polycystic ovary syndrome and health professionals support renaming the condition, stating that the current name does not reflect the full range of symptoms and medical risks associated with the condition.
The research involved international surveys and workshops conducted in 2015 and 2023. Participants included patients diagnosed with polycystic ovary syndrome (PCOS) and clinicians from specialties such as endocrinology, gynecology, primary care, and mental health, representing six continents.
PCOS affects approximately 12% of women globally. Diagnosis is based on a combination of irregular menstrual cycles, elevated androgens (male hormones), and polycystic ovaries. However, the study underscored that the condition also includes metabolic, cardiovascular, dermatological, and psychological features not captured by the name.
In 2015, awareness of these broader features was limited. Only 2.8% of patients recognized a link between PCOS and endometrial cancer, and just 38% understood its relationship to weight gain. By 2023, these figures rose to 83% and 96%, respectively.
Among clinicians, knowledge also improved. Recognition of the association between PCOS and fatty liver disease increased from 33% in 2015 to nearly 90% in 2023. Still, over 20% of patients remained unaware of risks such as cardiovascular complications and pregnancy-related issues, highlighting the need for continued education.
The study also assessed views on the name “polycystic ovary syndrome.” Most respondents considered it misleading, especially since ovarian cysts are not required for diagnosis. In 2023, 85.6% of patients and 76.1% of clinicians agreed that the name should be changed. Participants noted that the term reinforces outdated perceptions and obscures the condition’s complexity.
To move forward, stakeholders committed to a global consensus process. The plan includes international consultation, workshops, and collaboration with classification systems such as International Classification of Diseases (ICD) and Systematized Nomenclature of Medicine (SNOMED), with a transition expected over three to five years.
Participants favored including terms like “endocrine” and “metabolic” in a revised name to reflect the condition’s hormonal and systemic nature. Although no new name has been finalized, options under review include redefining the PCOS acronym to better align with current understanding.
Renaming a medical condition is a complex process with implications for care, research, and public understanding. However, the study suggests that a structured approach, supported by education, could reduce confusion and enhance recognition of the disorder.
By reframing PCOS as a multisystem condition and updating its name, stakeholders aim to improve diagnosis, care, and research while reducing stigma.
The authors declared no competing interests.
Source: eClinicalMedicine