SAT374 Indirect and Intangible Burden of PCOS: A Patient Advocacy Organization Study

Disclosure: L. Thai: Employee; Self; PCOS Challenge: The National Polycystic Ovary Syndrome. O. Delau: None. S. Yadav: None. R.P. Buyalos: Employee; Self; Fertility & Surgical Associates of California. S. Ottey: Employee; Self; Executive Director at PCOS Challenge: The National Polycystic Ovary Syndrome. Other; Self; Received honoraria from Institute for Family Centeredness, Travel support for attendance at Women's Health Innovation Summit. W. Patterson: Employee; Self; PCOS Challenge: The National Polycystic Ovary Syndrome. R. Azziz: Advisory Board Member; Self; Arora Forge. Consulting Fee; Self; Rani Therapeutics, Fortress Biotech, Spruce Biosciences, Core Access Surgical Technologies. Grant Recipient; Self; Foundation for Research and Education Excellence, Ferring Pharmaceuticals. Stock Owner; Self; Martin Imaging. Background: Polycystic Ovary Syndrome (PCOS) is a complex genetic trait, and the most common endocrine disorder of women, clinically evident in between 10% to 20% of all reproductive-aged women. PCOS is associated with reproductive, cardio-metabolic, dermatologic, maternal health and mental health morbidities, with an estimated healthcare-associated economic burden exceeding $15 billion yearly for the U.S. alone. However, the extent of indirect (lost wages due to disability or death related to the disease) and intangible (related to pain, suffering, and reduced QOL) costs of PCOS are unknown. Objective: To determine the extent of the indirect and intangible burden of PCOS. Materials and methods: We performed a prospective survey among members of an international patient advocacy organization using the Work Productivity and Activity Impairment Questionnaire: General Health v2.0 (WPAI:GH), the European QOL (EQ-5D), and the Willing-to-Pay (WTP) assessment instruments. Results: A total of 426 women responded to the study. The WPAI:GH indicated that 77.9% (332/426) were employed and had worked in the past 7 days, with 71.1% working ≥31 hrs. Of all respondents, 20.4% (70/344) reported missing ≥6 hrs for health problems. Health problems significantly (Likert score 8-10) affected the ability to do regular daily activities in 18.3% and productivity while working in 9.0%. Of the total hours worked, 9.97% (1162/11654) were reported as missed due to health problems. The EQ-5D survey indicated that 51.6% and 35.8% of respondents suffered moderate to extreme anxiety/depression and pain/discomfort, resp; and 11.5%, 6.0%, and 18.9% reported moderate to significant difficulty in walking, self-care (washing and dressing), and usual activities (e.g., housework, etc.), resp. When assessing how good or bad their health was on the day of the survey, 40.6%, 50.1%, and 9.2% described it as the ‘best/near best’, ‘moderate’, or ‘worse/near worse’ that they could imagine, resp. When queried regarding the maximum amount they were WTP as a one-time payment within their economic means for a hypothetical cure of PCOS, 61.0%, 24.9%, and 12.7% of respondents stated they were willing to spend $0-$5000, $5001-$25,000, and >$25,000, resp, although many noted they were willing to pay well beyond what they could afford. Conclusions: Regarding indirect burden, due to health problems, 10% of total hours worked were reported missed, and 20% of respondents reported missing ≥6 hrs.; in 9% of respondents, health problems significantly affected work productivity. Regarding intangible burden, >50% of respondents reported significant anxiety/depression and 20% moderate to significant difficulty in their usual activities; 10% reported their health as the worse/near worse they could imagine. Overall, the economic burden of PCOS far exceeds its direct medical costs, and indirect and intangible costs need to be considered. Presentation Date: Saturday, June 17, 2023