Shortcomings of Current PCOS Care: Provider Bias and Provider–Patient Goal Misalignment [ID 2683466

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INTRODUCTION: Polycystic ovary syndrome (PCOS) affects 5–7 million people. Diagnosis is often only achieved after long delays and multiple opinions. We conducted focus groups to elucidate patient experience with diagnosis and treatment in PCOS. METHODS: We conducted semistructured virtual focus groups of individuals with diagnosed or suspected PCOS recruited from a university hospital obstetrics and gynecology clinic. Questions focused on experiences of bias in PCOS care and opportunities to improve care approaches. Rapid qualitative analysis of focus group transcripts was performed. RESULTS: Participants' (n=24) median age was 29 years. Three were non-White, eight Hispanic or Latino ethnicity, and one other than female gender. Provider bias influenced PCOS diagnosis: PCOS testing was delayed in those with smaller bodies, while symptoms of participants with larger bodies were attributed to body weight rather than to medical conditions. Provider recommendations were frequently misaligned with patients' needs and goals: Providers focused on weight loss when other approaches were requested, and fertility was centered, even for patients not desiring childbearing. Providers assumed and mistrusted patient reports of health behaviors: Larger body size was assumed to imply poor dietary habits and sedentary lifestyle. Participants frequently self-advocated to access testing, alternate treatments, and specialists. Conceptualizations of ideal PCOS care included centering patients' goals, access to specialists, and care coordination. Participants desired PCOS education, resources, and support for themselves and their communities. CONCLUSION: Provider bias and misalignment with patients' goals are common experiences in PCOS care. Centering patients’ goals, addressing weight bias, and creating additional PCOS educational and support resources are earnestly needed.