Polycystic ovary syndrome (PCOS) is a complex endocrine disorder, affecting 13% of reproductive-aged women. While lifestyle management is the first-line treatment for improving complications, women experience challenges with implementation. This cross-sectional study aims to identify the types and sources of dietary and physical activity (PA) interventions implemented by women with PCOS and understand how they use self-management strategies to support lifestyle change. An online questionnaire was disseminated via a consumer-based PCOS website (May 2015-2016). Women (n = 1167) were aged 18-45 years and primarily born within the United States (70%). A quarter or less of women (diet 25%, PA 14%) sought lifestyle advice from health professionals (medical clinicians or dietitians) compared to over half (diet 59%, PA 67%) using alternative sources, namely from online platforms. While only 33% and 16% of women reported following formal dietary or PA guidelines, respectively, 57% had implemented a 'special diet' to manage their condition, many of which were inconsistent with evidence-based practice in PCOS. Participants also displayed a low level of engagement with important self-management behaviors, including goal setting and positive self-talk. These findings suggest that online information may promote inaccurate and ineffective lifestyle advice and emphasize the need to increase engagement with qualified health professionals.
Keywords: behavior change; diet; physical activity; polycystic ovary syndrome; self-management.