DOI: 10.6084/m9.figshare.21501139
title: Medical journey of patients with polycystic ovary syndrome and obesity: a cross-sectional survey of patients and primary care physicians

description: Patients with polycystic ovary syndrome (PCOS) report dissatisfaction with the diagnostic process and are more likely to have overweight or obesity. We wanted to understand the role that primary care physicians (PCPs) play in the diagnosis of PCOS and how they contribute to treatment of patients with PCOS and obesity. A cross-sectional online survey was completed by 251 patients with PCOS and obesity (BMI ≥30 kg/m<sup>2</sup>) and 305 healthcare providers (PCPs, obstetricians/gynecologists, reproductive and general endocrinologists). This paper focuses on the 75 PCPs treating patients with PCOS and obesity. In the most common patient journey, we found that most patients with PCOS and obesity (53%) have initial discussions about PCOS symptoms with PCPs. However, less than one quarter of patients receive a PCOS diagnosis (22%) or initial treatment (24%) for PCOS from a PCP. One quarter of patients also reported receiving a misdiagnosis from a PCP prior to their PCOS diagnosis. Compared to other healthcare providers surveyed, PCPs were the least comfortable making a PCOS diagnosis. Compared to PCPs without an obesity management focus, PCPs with an obesity management focus were more likely to diagnose patients themselves (38% vs 62%) and initiate PCOS treatment themselves (42% vs 57%). According to PCPs, difficulty with obesity management (47%) was the top reason that patients with PCOS and obesity stop seeing them for PCOS management. PCPs are often the initial medical touchpoint for patients with PCOS and obesity. However, PCPs play a smaller role in diagnosis and treatment of PCOS. Increasing education on obesity management may encourage PCPs to diagnose and treat more patients with PCOS and offer strategies to help patients with obesity management. Polycystic ovary syndrome (PCOS) is a condition where women may make more male hormones than usual, have irregular periods, and have trouble getting pregnant. PCOS can look very different in different patients. This can make it difficult to diagnose. Patients with PCOS are more likely to have obesity (unhealthy excess weight). Having obesity can make patients’ PCOS worse and losing weight is an important treatment for PCOS. We wanted to learn more about what patients with PCOS and obesity experience as they try to manage their PCOS and the role of primary care doctors in diagnosing and treating patients with PCOS. To better understand this journey, 251 patients with PCOS and obesity and 75 primary care doctors who treat patients with PCOS and obesity took an online survey. Most patients (53%) first talked about PCOS symptoms with a primary care doctor. However, less than 25% of patients received a PCOS diagnosis or first treatment from a primary care doctor. One quarter of all patients said they were misdiagnosed by a primary care doctor before being diagnosed with PCOS. Primary care doctors were less comfortable than specialist doctors in diagnosing and treating patients with PCOS. Primary care doctors with a focus on weight management were more likely than other primary care doctors to diagnose and treat patients with PCOS themselves. Giving primary care doctors more educational support with PCOS diagnosis and weight management could help patients with PCOS get diagnosed earlier and treated better.