Patient Experiences With Dismissal, Delay, and Uncertainty in Diagnosis of Polycystic Ovary Syndrome [ID 2683465

Abstract

INTRODUCTION: Polycystic ovary syndrome (PCOS) affects approximately 10% of females and is underdiagnosed, undertreated, and underresearched. A majority of people with PCOS report dissatisfaction with their care experiences. We conducted focus groups to identify factors contributing to suboptimal PCOS care. METHODS: We conducted 60- to 90-minute virtual focus groups. Patients receiving PCOS care at a university hospital obstetrics and gynecology clinic were recruited. Participants were asked about PCOS symptoms and experiences of care. Rapid qualitative analysis was performed to identify major themes. RESULTS: Twenty-four participants completed focus groups. Three identified as any non-White race and eight as Hispanic or Latino; median age was 29 years. Participants' most bothersome symptoms were menstrual irregularity, unwanted hair, cystic acne, and pelvic pain. Time from symptom onset to diagnosis ranged from 2 months to 13 years. Providers’ dismissal of symptoms and failure to perform diagnostic testing contributed to diagnostic delays. Once diagnosed, participants reported feeling confused, overwhelmed, and fearful, and received little education from providers. Participants desired more information about treatment options and implications of PCOS on fertility and long-term health. Regarding initial treatment, recommendations for weight loss and prescriptions for oral contraceptives, metformin, and spironolactone were common. Referrals to nutrition and behavioral health services were rare and non-existent, respectively. Treatments focused on individual manifestations of PCOS more often than comprehensive well-being. CONCLUSION: Dismissal of symptoms, delays in diagnosis, and uncertainty about future health are common patient experiences in PCOS care. Our findings identify a need for improved patient resources and provider education about PCOS manifestations, diagnosis, and treatments.