Unmet information needs of women living with polycystic ovary syndrome

Approximately 5 million American women live with polycystic ovary syndrome (WLW PCOS), a complex hormone disorder that impacts a woman's health across the lifespan. To manage its impact, WLW PCOS have a great need for information, yet little is published on their information needs. The purpose of this study was to explore the specific information needs of WLW PCOS. Fifty-seven women belonging to an online PCOS support group completed an online questionnaire containing closed-ended questions, regarding medical history and demographics, and open-ended questions, regarding information needs. Most participants were non-Hispanic white (75%) and straight (89%) with some college education (84%). The mean age of participants was 29 years. Women reported an average of six PCOS symptoms, including overweight (91%), irregular menses (84%), and hirsutism (84%). Women also reported a number of PCOS-related conditions, including infertility (63%) and hypertension (35%). Thematic analyses revealed that women were most interested in information on specific lifestyle modifications to improve PCOS symptoms. Many women expressed a desire to be medication-free and identified PCOS as a chronic condition. Women also wanted more information on its etiology, and, as a novel finding, some women expressed concern over “passing” PCOS to their daughters. These data suggest that women do not receive sufficient information and guidance on how to modify their lifestyle and take control of their health. In the future, WLW PCOS should be included in the creation, design, and evaluation of information about their condition. Also, healthcare providers should discuss lifestyle modifications as the first-line PCOS treatment.