Gaps and opportunities in polycystic ovary syndrome care—a qualitative study

Objective

To understand perceived shortcomings in polycystic ovary syndrome (PCOS) diagnosis and care among individuals living with PCOS.

Design

Qualitative study conducted at a university hospital Obstetrics and Gynecology clinic.

Subjects

Individuals diagnosed with or suspected to have PCOS.

Exposure

Virtual focus groups with semistructured questions.

Main Outcome Measures

Participants’ diagnosis with, management of, and ideal care approach for PCOS.

Results

Among 24 participants, 3 primary themes emerged: (1) symptom dismissal before diagnosis of PCOS negatively contributes to wellbeing, (2) goals of care between providers and participants were perceived as misaligned, often focusing exclusively on weight management and fertility, and (3) participants found self-advocacy as a necessary means to seek answers, resulting in use of social media as their main source of information.

Conclusion

PCOS is a complex condition in which symptoms are often dismissed by providers, leading to frustration and delay in care for individuals. These study results emphasize a need for greater educational resources and a revised approach toward more comprehensive management of PCOS.